Monday, May 6, 2013

The Quest, the Request, the Plea

In early fall of 2006, I sat nervously in the waiting room of my endocrinologist's office. This was it. This was the day I had finally decided that I wanted to get an insulin pump, and was finally going to get up the nerve to bring the idea up with my doctor.

I had spent months preparing for this visit. I had done online research, read manuals, talked to people who already used the pump, brought the issue up with my diabetes educator, and contacted the pump companies. All the usual things that most prospective insulin pumpers do. My hesitation, however, was not the idea of going on the pump, but whether I would be able to safely use one.

My biggest concern was being able to safely program the device. The screens had tiny, low-contrast fonts that I had seen online and was sure I would not be able to read in person. When I saw several pumps at our hospital's diabetes clinic, my suspicions were confirmed. Holding the device a centimetre from my eyes and squinting with the backlight on, I was unable to even guess. I visited my optometrist who specializes in patients with low vision and explained my predicament to him. Using an MP3 player with a similar type of screen, we found a strong magnifier that helped me see most of what was written there, although I still had to take a guess at some of the numbers.

I consulted with other insulin pump users who were blind, some of whom had no vision. I read articles about compensatory techniques. I learned that the touch/audio bolus feature on most pumps were accessible, but that aside from that, most of the advantages of using a pump—variable basal rates, extended boluses, temporary basal rates, bolus calculators—were out of reach. People and articles said that the mechanics of using a pump, such as filling cartridges and changing sets, were no problem to complete without sight, and not having access to on-screen information was the biggest hurdle. I discovered that memorizing menu layouts and counting button presses were important strategies that were widely used. When I was finally convinced that I would be able to use a pump safely, between memorizing menus and using a magnifier, I brought it up with my doctor.

Not surprisingly, my endocrinologist was extremely excited about the idea of a pump. In fact, I had never seen him so excited as he was at that appointment. At the same time, it also became clear why he had never mentioned the subject before I brought it up. "How would you use it?" was the first question he asked after I brought up the idea. "They have very small text. Could you see the screen?"

I told him that I had done my homework, had seen several pumps in person, and that I could see the screen with a magnifier (I didn't add, "If the lighting is right, and as long as there are no 6s and 8s I have to distinguish"). After discussing the issue for a few minutes he was willing to sign off on the idea. The issue of my being able to safely use the pump was his one and only concern, and a legitimate concern given that a mistake while using a pump could be potentially fatal. "I think you will do very well on the pump," he said as the appointment wound to a close. "I would have recommended one for you years ago, but I thought you wouldn't be able to use it." I left the appointment with mixed feelings of excitement and anger. I had been struggling with my blood sugars for years, and my endocrinologist had held off recommending something that could help simply because he thought I wouldn't be able to use it. I was angry at him for assuming, but I was also angry at the insulin pump companies for making a product that was inaccessible.

The insulin pump is not unique in its inaccessibility. Among diabetes products, and among electronic products in general, it's the rule rather than the exception. Every day I and millions of others with visual impairments encounter products we can't use independently, save for memorizing sequences of button presses and hoping no error message pops up to interrupt the flow. Every time I use my microwave, printer, oven, or thermostat; every time I use a point of sales device, ticket vending machine, fitness equipment, or apartment buzzer system, I encounter inaccessibility. Every time I consider the purchase of a new device, my first and foremost consideration is accessibility. Or, failing that, ways to work around inaccessibility, which for me either equates to holding the screen at odd angles a centimetre from my face as I squint through a strong magnifier, asking for help, or, failing those, pressing random buttons and hoping one of them works.

Anyone who knows anything about blindness-related organizations can tell you that they don't always get along very well. Squabbles about service delivery, funding sources, and mission statements abound. The history of blindness is filled with interesting tales including such conflicts as the "War of the Dots" that surrounded the standardization of braille. But the one thing they all do agree on, whether they are a service provider, consumer advocacy, or not-for-profit organization, is the need for products to be designed for accessibility. The quest for accessible products is the one issue that has seen groups band together in protest and advocacy for a unified cause.

The concept of universal design—that products be designed in such a way that they are usable by the widest audience possible—has long been more theory than practice, but with technological advances there is little reason that universal design features can't be included in most, if not all, products. Shortly after starting on my first insulin pump, I was fortunate to come across a study of new insulin pump users, which I signed up for. Confidentiality prevents me from revealing any details (and they wouldn't reveal to me which company was conducting the study), but my experiences as a new pumper, and my comments regarding the pump's features were collected over the course of several months. I had experiences, thoughts, and ideas each week that I documented, but with every submission I put the same request, regardless of my other experiences: I wanted a pump that could talk. I also documented experiences of missed alarms and incorrect boluses, that were primarily caused by me not being able to see the screen, and that could have been easily prevented. These days, with years of experience behind me, I don't make these mistakes as often, but they still happen on occasion.

I see frequent calls within the online diabetes community for better diabetes products. I admit that I rarely read these, and even more rarely participate. More precise insulin delivery and a lower price tag I can concede to; but smaller, faster, prettier, sexier? I just don't care. The only thing I want is diabetes devices that are accessible. The few times I have piped up in discussion threads I tend to receive responses with all kinds of excuses as to why accessibility wouldn't be possible; it would make devices too bulky, too expensive, too ugly, too annoying. It's understandable that people wouldn't consider accessibility an important feature when they themselves don't currently need it; but, to me, accessibility will always be my top priority and my top request.

Recently, there have been some glimmers of hope in the area of electronic devices and accessibility for people with visual impairments. The first glimmer of change came with some companies that made a handful of accessible products such as talking microwaves and voice recorders. Then, in 2009, Apple added accessibility features to the iPhone, including a screen reader (VoiceOver) that enables people with low or no vision to use the device. Not only was the idea of a totally blind person using a touchscreen device mind-boggling at first, but the fact that this feature was included in a mainstream device was revolutionary. Soon, the call for universal design exploded, with advocacy groups lobbying companies such as Amazon, Microsoft, and Google to follow Apple's example. Slowly, very slowly, other companies have been following suit.

A few days ago I got an e-mail with news that the latest update to the Kindle app for iOS is accessible with VoiceOver. I literally jumped out of my chair in excitement. I felt like the floodgates had opened. Years of advocacy efforts by groups and individuals—including an e-mail to Kindle Support from me several months ago, lamenting the lack of VoiceOver accessibility (which I like to think helped in some small way towards this outcome)—and it was finally here. Suddenly, over 1,000,000 books previously inaccessible, were accessible! (When you consider that less than 5% of printed material is available in an accessible format, 1,000,000 books is absolutely huge!) I went home that night and read. And, despite a thesis to work on, I've been reading ever since. Books that had previously taken me hours of time to scan were available in an instant; what a refreshing change. (Apple's iBooks have long been accessible; maybe it's just the type of material I like, but most books I wanted to read I could never find on iBooks but could find on Kindle.)

I am hopeful that it is only a matter of time before diabetes companies start taking accessibility seriously. These days pumps and CGM devices routinely transmit data between devices, and there is no reason in my mind why the OmniPod, for example, couldn't have several different PDM devices—the regular one, one with speech output, and one for people with mobility or fine-motor issues. Or, even better, Animas could build their Ping meter to have a "Turn speech output on" option it its Setup menu, and have cases or skins that could be put on the meter to make gripping easier and buttons bigger for those who need these types of accessibility features. The ability for some meters to communicate with the iPhone provides other tantalizing possibilities. It's all a matter of creative thinking, and most of all, recognizing the importance of these types of features.

I send e-mails to companies on a fairly regular basis to let them know that their software or hardware is not accessible, give them some pointers to resources, and offer to help in any other way I can. Unfortunately, the requests often go unanswered. With mainstream devices, a request is one thing. With medical devices, especially ones as potentially life-changing as glucose meters, insulin pumps, and continuous glucose monitors, the request often turns into more of a plea. There have been numerous callsmany times now—for diabetes devices that are accessible and safe to use for people with visual impairments. And, there have been some slow signs of improvement. Mostly, though, those of us who have diabetes and a visual impairment are faced with squinting, memorizing menus, and guessing ... or not using them at all.

I can only hope for the day when I will open a new insulin pump or CGM device and have it talk as soon as it starts up. Some days, most days, it seems like the cure will probably come first (and we all know how far off that promise has been). Other days, when I find myself picking up and using the same cell phone and apps all my colleagues are using, or the day I find myself downloading an accessible copy of a book the same day my friend recommends it, I catch a glimmer of hope.

1 comment:

  1. You bring up some very good points, especially with the Omnipod PDM and the Ping meter-remote. If it doesn't involve modifying the actual insulin-delivery mechanism, building some accessibility into the communications piece (or offering a modified version) should not be a too-difficult task. I'd love to see the manufacturers work on that.