Life with diabetes can be complicated enough for most of us, but dealing with all the required daily tasks without being able to see what you're doing...? That's the reality for longtime type 1 Ed Worrell in Montana, who was diagnosed as a young child but lost his eyesight completely about a decade ago in his early 20s.
While Ed manages quite well, and is quite tech-savvy as owner of his own technology training company, he tells us that there's definitely a "blind spot" in our Diabetes Community regarding non-sight-friendly tools. We've heard that before over the years, and it's unfortunate to hear that huge gaps still remain on these accessibility issues. Today, we welcome Ed to share his own D-story and what he believes is needed on this front:
Talking Low-Vision Accessibility with D-Advocate Ed Worrell
DM) Hi Ed, thanks for connecting. Can you start by sharing your diabetes journey?
Ed) I was diagnosed with type 1 in 1987 when I was 4 years old, so it’s been 31 years now. Up until 2006, I was going good. But being a young and dumb adult, I stopped caring about the diabetes for a while. Because of not taking insulin and just not caring. I ended up in the hospital with a blood sugar of over 1200. Luckily, my mom came home from work for lunch and found me in my room in the basement on the floor. My heart had stopped and I’d been down there without breathing, and my skin had started to turn grey. I ended up in the ICU for a week and a half, and they were able to revive me. But the first few days in ICU, the doctors were saying that I’d be lucky to walk again because of all the nerve damage to my spine. A side effect from all that is that I have a stutter every so often. I had to take nine months of physical therapy to re-learn how to walk after that and also have drop foot, so my toes won’t come back up when I’m tired and walking, meaning I’ll trip every so often.
Yikes! We’re so sorry to hear you went through all that. Is that what led to vision loss?
About two years later, in late 2007, I started having some problems seeing. It was September and I thought it was just allergy-related. But it turns out, my retinas started detaching from all the trauma previously. And then diabetic retinopathy took my eyesight in about three or four months. I had over 10 eye surgeries and they couldn’t save my eyesight, because the retinas were so detached and scarred. So now I’m a visually impaired type 1 diabetic.
Would you mind expanding on what changed in your 20s, leading to not taking insulin and caring about diabetes?
It was a little bit of burnout, because I didn’t have any good doctors in town and they were always yelling at me. Just not trying to be a part of the solution, just blaming me. And I got burnt out on diabetes from that. It was also then, for the first time during that timeframe in about 2006, that I had to take care of my diabetes on my own without my parents’ insurance. I’ve always been working full-time ever since the age 16, but for a couple years I couldn’t afford insurance. And without that full medical insurance, I couldn’t afford insulin. That was a big part of it. I was worrying about affording insulin and supplies, and then I thought it wasn’t worth it because I had to work three jobs to afford insulin and those jobs wouldn’t give me insurance. It was all of that combined into big burn out. Back then. I was about 21-22, so it just felt tough and near impossible, and the whole process leading up to everything.
Again, we’re so sorry that all happened…
No, it’s all good. I’ve made the best of it. That was an interesting two or three years there, to be honest.
Your visual impairment has played into your current profession, right?
Yes, I'm co-owner of OverHere Consulting, which is primarily a device and tech training company. We travel around Montana working with people who are visually impaired, teaching them how to use assistive technology and iPhones, Androids, iPads, and other devices. Sometimes that comes down to showing them how I deal with my diabetes as well. Sometimes these independent training centers that work with newly-blinded adults or kids kind of glaze over little tricks on how to use these tools most effectively. Even on simple tasks like taking your blood sugar. I don’t know if they think ignorance is bliss, or they don’t have the time or budget to explore different options. I have started working with many diabetics I know, to show them the options that are out there. It’s been kind of fun to do. If someone asks me how I manage diabetes, I share that. If I can help make someone’s day with diabetes a bit easier, I’m all for that.
There's a lot of talk about features that make tech products 'accessible'...
Yes, but like everything for the visually impaired, there’s a difference between accessible and usable. Accessible means you can access it and have a screen-reader tell you the text and links, but it can’t interact with the website outside of using apps or different tools. We need things that are truly usable. It’s a whole other level of living with type 1 diabetes.
What were the first diabetes tech devices available at the time you lost your sight?
A decade ago, the Prodigy Voice was one of the first accessible devices I got. My wife is the Queen of Google, and she found online the Prodigy Autocode meter. That would only read the glucose levels out to you after a finger pick, but it wouldn’t read memory recall or anything like that. It was a good-sized meter, about as long as a recipe card and pretty thick and bulky. You hated taking it with you anywhere. After that, they refined the Prodigy Autocode to make it more stream-lined and slender, a smaller device.
Again, I found the same issues with not being able to change settings or hear memory recall readings. But it would read the result, and if a strip was still in the meter you could hit a button to have it tell you the result again. That was a small step forward. About five months later, they came out with Prodigy Voice that was a bit bigger, and had full capability to change the time/date settings and you could hear several different averages. The downfall is, that it’s now not updated in maybe six years, and it’s still all we have available on accessibility. It’s old technology now. It seems like the blind diabetes community was getting these new devices all at once, and then it just came to a complete halt.
Have you reached out to diabetes companies about this?
It seems like they don’t see a large demand for these meters, so the companies just don’t do it anymore. That’s the way I see it, though I don’t know if it’s accurate enough. Now I keep running into another problem: being completely blind, the diabetes companies just ignore me. They all say “Take care of your diabetes or you’ll go blind!” But as soon as you lose your eyesight, they say “Sorry, can’t help you.”
The big companies don’t focus on this. There is only one meter that you can buy at a retail store that’ll talk to you: the ReliOn meter at Walmart. And sadly, it’s not fully accessible for the visually impaired either. It talks to you on the first layer of menus, but then when you go deeper to look at results, the voice stops and it won’t tell you any results in memory recall.
How do you navigate insulin delivery?
I use insulin pens. I’m on Tresiba and Novolog, and have been using those pens since I was sighted. All the pens click, so I can hear how much insulin I’m drawing up and how it’s being delivered. If you’re on U-100 pens, there is one click per unit. It’s not hard to figure out. I don’t have a problem with my doctor continuing to write the prescription for pens, but some doctors who have visually impaired patients won’t do that.
I have a friend in California whose doctor wouldn’t give her an Rx for a pen, because she couldn’t independently draw the insulin. And even the insulin companies tell people who are visually impaired not to give their own insulin, because you can’t rely on the clicks. But what else are we supposed to do? As far as I know, there are no visually accessible insulin pumps on the market right now. There was some talk about that in the past with the National Federation of the Blind, but that development didn’t seem to go anywhere.
What about CGM?
I first started using the Dexcom G5 and loved it, even though it was a bit tricky at first to learn it independently with pulling the tape off the sensor backing. Once I got that down, I used the Dexcom CGM for about three years. I worked with over the years, too. You have your glucose level and trend arrow, and I actually walked them through how it should work with voice-over. Before, it would say your blood sugar, maybe 135, and then just say ‘Arrow.’ But nothing about the direction that trend arrow was at or going – which is pretty pointless and tells you nothing. I’d have to check my blood sugar by fingerprick every five minutes to see where it was going. We had the alerts that would tell you, but at one point I got fed up with information overload on that. I got them to make the improvement so it would tell you it’s “constant,” “rising, or dropping slowly” or “rapidly.” That’s about the biggest change they made for people who are visually impaired, which is fine… they just could have gone a few extra steps beyond that and they didn’t want to. They did the bare minimum.
It was amazing and I loved the system, but unfortunately it kept going up in price and my insurance stopped covering it to a point where I couldn’t afford it. So I switched to the Abbott FreeStyle Libre in August (2018) and that’s what I am using now.
Can you talk about using the FreeStyle Libre (flash glucose monitor)?
At first, I still had to use the handheld reader because the LibreLink app wasn’t yet approved in the US. The way I had to use it, was scanning the sensor with the reader, and then use an iPhone app to read the screen on the handheld reader, and tell that to me. The unfortunate part of that was it would read the number, but not the trend arrow. It just wouldn’t recognize the arrow at all.
I’m now using the Libre with the iPhone LibreLink app now that it’s available in the US. I knew from YouTube videos that there was a text-to-speech feature on it, telling you verbally once you scan a sensor what your glucose is doing. But again, the app development team doesn’t fully understand accessibility for the visually impaired. Some of the buttons are labeled and some aren’t, and it’s interesting to see simple things that don’t make any sense to voice-over users. For example, the menu button in the top left corner was labeled, “slide out underscore menu” and that’s what it would say to you… instead of just labeling it “menu.” The scan button in the top right corner was just labeled “button.” So I was able to go in and just re-label it because there’s a tool in voice-over that allows that. But I shouldn’t have to; the developer should take that little extra step to properly label it. I’m not afraid to just tap on a button to see what it does, but there are a lot of blind people who just don’t want to out of fear of breaking the app or doing something wrong.
It’s a whole other avenue of being a type 1 diabetic when you can’t see what’s going on.
How do you go about reading diabetes blogs and other websites?
I use a screen reader that is included on all Apple devices called VoiceOver. It reads text and alt-text for images if they are provided by the web developer. It also reads out text messages and emails for me. On the iPhone there are specific gestures that need to be performed to control the VoiceOver screen reader. On the Apple MacBook Pro that I use, I rely on a series of multi-key commands to navigate the operating system and activate icons, open files, and activate links on a web page. This is a very simplified description of the functions.
Do you use anything like Amazon Echo or Siri to have your tech talk to you?
I’m an odd-man-out here on that. I do have an iPhone and iPod, and an Amazon Dot Echo. But I personally hate virtual assistance. Generally, the visually impaired community has adapted to them and embraced them. They really like them, because you do everything by voice and it shortens how you can do things a lot of the time. Because of my job, I have to know how to use the iOS and Android operating systems and these tools, inside and out. So I am fully aware of how to use these Artificial Intelligence tools and systems, even though I don’t personally use them much.
Have you turned at all to do-it-yourself, #WeAreNotWaiting tech?
I do look into that stuff, but it’s really over my head. It is really cool what some have been able to do, but at what cost? That’s how I look at it. I’m all about making things work the way I need them to work, and altering it if possible, but just not this… My dad was a computer programmer for 32 years and I have a lot of computer background – I was learning DOS at 6 years old. So I understand it. But again, all of that and even Nightscout seems like an awful lot to go through just to be able to get your blood sugars on a smartwatch. Still, I’m all for it for those who want to use it.
In talking tech with visually impaired PWDs, what are the most common issues you hear?
I’ll be blunt here: The biggest problem in the visually impaired community is type 2 diabetes – whether it’s age related, or otherwise. Those of us who are visually impaired tend not to be the most active. It’s tough to get out, to just go walk around a mall or outdoors. That’s something many people take for granted. It’s complicated and scary, because the world is such a big place. So a lot of the time what I’m running into is people struggling to get outside and be active so they aren’t needing to rely on insulin or medications as much. They just want to get out and do activities to get blood sugars down. I’ve worked with certified orientation and mobility instructors, and they help someone who’s visually impaired learn how to walk around safely with a white cane. Even just walking around the block once a day is good.
After that, the second biggest issue I hear about is the talking glucometers. They just aren’t easily accessible; people just don’t know where to find them. They often don't know you can go to Amazon, and even Walmart has the Reli-On meter for sale online now for $18. It’s pretty inexpensive.
Sounds like you have quite the experience helping the visually impaired understand diabetes technology?
I’m happy to help if I can. Lately, I’ve been working with some visually impaired PWDs on how to talk with their doctors about getting the Libre. They may not have the money for Dexcom or find the Libre more visually accessible, so I am helping them on best ways to communicate with their doctors, insurers, and pharmacies about that.
And how do folks find you to get help?
Sometimes people find me and sometimes it’s the other way around. We work with a lot of state and federal agencies, too, and they know I’m a diabetic, so if they have a diabetic who’s struggling, they will have that person call and talk to me just on the diabetes part of it. I’ll train them on the tech, but I also do it as a fellow diabetic trying to figure it out just like they are. It’s one of those “friend helping a friend with diabetes” things.
What do you think is most needed from diabetes industry?
Basically, an openness to have that conversation about accessibility. Often where we struggle most in being visually impaired, is that no one knows about accessibility for us. I’ve had problems in calling companies that make diabetes technology and asking simple questions of them: “Is your CGM or device accessible with VoiceOver?” And they never give me a straight answer. Some even don’t even understand what VoiceOver is and does.
That brings on a whole impromptu lesson on Accessibility 101, and they’re blown away that something like that even exists. It’s just interesting. I don’t know if it’s a lack of training, or they don’t have the documentation readily available. It needs to be weaved into their process more, and it needs to improve on the entire market.
Maybe it comes down to lawsuits, and them being afraid of having that conversation in case something happens to a visually impaired diabetic using their product. It always seems like we take one step forward, and two steps back on accessibility – not only on healthcare and diabetes apps, but mainstream technology. I think a lot of software and tech companies get all gung-ho because there’s going to be a new market for their product and that’s nice, but then they start digging into the accessibility and realize how difficult it’s going to be. That’s why we don’t see it materialize, and the hang up we always seem to face.
Thanks for sharing your story, Ed, and the important work you do helping the visually impaired D-Community better manage their lives with diabetes.