Monday, May 12, 2014

Change the World

Note: This is my first time participating in Diabetes Blog Week. This is my post for Monday's theme: Change the World.
ocularcentrism (noun):
(1) The privileging of vision over the other senses.
For several years now I have been at once fascinated and dismayed at how everything in our modern world revolves around vision. Nearly every appliance, computer, service, or policy seems to be designed with the assumption that the consumer of such goods or services will have near-perfect vision.

Just think of shopping—something every one of us has to do on at least a weekly basis. Have you ever considered how much you rely on your vision in a supermarket? Everything from the signs informing you of which foods are in which aisles, the price tags, the 50% off sale tags, and of course the items on the shelves themselves, assume that the consumer will have vision sufficient to see and read all this information. The movement inside a grocery store is often chaotic—unlike roads, there is no controlled traffic flow. Carts get tangled in intersections, people come to abrupt halts when they see an item of interest, and carts are left unattended in the middle of aisles while their driver dashes off to get some forgotten ingredient. And then there's the checkouts. A little more organized in terms of movement, perhaps. But everything from the number of the checkout to the price that flashes up on the cash register to the point of sales device you use to enter your PIN is inaccessible. And that's assuming there's a person behind the counter, not the text-heavy, touchscreen-interfaced world of self-service checkouts.

This is just one example of one weekly chore. I could go on for pages about all the tasks we engage in on a daily basis that are based on the assumption that we can see or that vision is the only way of completing a task. Some are more accessible than others, of course. You don't necessarily need to see the readout on an oven's LCD display to cook a gourmet meal, as long as the controls on the oven are accessible. But it's no wonder that people are frozen by fear at the prospect of losing their vision!

Like the tasks in our everyday lives, there are a wide variety of chronic illnesses out there. Each requires its own regimen of treatments and therapies. And, like grocery shopping compared to preparing a meal, some are more accessible than others. A condition that entails little more than popping a pill each morning is going to be more accessible than a multi-faceted, complex condition like diabetes. Most other chronic illnesses, however, are not leading causes of vision loss worldwide. And I would have hoped, just maybe, that diabetes would take the lead in accessible healthcare. Because today, right now, there is precious little in the way of accessible healthcare, and even less in the way of accessible diabetes care.

I'm not just talking about technology. Glucose meters and insulin pumps and continuous glucose monitors are certainly staples of diabetes care, particularly for those of us with Type 1 diabetes, and it is true that these devices have a long way to go. Today people with diabetes are demanding features, style, and choice in the diabetes products they buy. But if you happen to be someone who needs accessible diabetes equipment, you have a choice of two fully accessible talking glucose meters, a choice of zero accessible insulin pumps, and a choice of zero accessible CGMs. Not exactly setting a standard, particularly when you consider that there are numerous talking blood pressure monitors, thermometers, and scales out there to choose from.

But, no, I'm not just talking about technology. The entire world of diabetes care is extremely dependent on vision, largely leaving behind the nearly 1 in 5* people past middle age who have both diabetes and a visual impairment. For me, growing up with a visual impairment, it started right when I was diagnosed with Type 1 diabetes. Within days, it was apparent that I had difficulty getting the drop of blood on the test strip—using strips that, in the early '90s, didn't suck up blood, couldn't be touched, and required a "hanging drop" of blood to be placed squarely on a target area. Then, when I was a teenager and taking on more responsibilities with diabetes care, I was unable to measure insulin into a syringe even with a special syringe magnifier. As an adult, it was my adventures in getting an insulin pump that forced me to find work-arounds to inaccessible equipment yet again. Insulin vials are designated by colour, not by shape or tactile features. The same is true of insulin pens (which, thankfully, do click as units are measured—one of the truly accessible parts of diabetes care). There are dozens of books out there about diabetes, most of which are not available in alternate formats such as braille or audio (or, if they are, have all the helpful graphs and charts omitted). Even carbohydrate counting is challenging, having to read tiny labels off packages of foods. Most diabetes management software is not accessible, including most mobile apps, even though the platforms they run on include accessibility features. And even diabetes education faces challenges as it is more often delivered online using inaccessible software platforms.

But it doesn't have to be this way. The key in my discussion of all of these issues is that the root of the problem is the assumption that customers and participants will have good visual acuity, even in the face of the fact that this disease (and aging in general) is a leading cause of impaired vision. And a big reason for this assumption is that people simply don't think about it until it affects them or someone they love. I can't blame them for that. Many of us never thought about diabetes until it barged into our lives. But this is my cause, this is my passion—to make people aware of and think about accessibility issues surrounding diabetes.

This is not my only area of advocacy, but as something that affects me and about 4 million other people in North America,* it's a cause I chip at a little each day. I write e-mails to companies when I hear about the next great pump (the Cellnovo, for example) asking if it will include accessibility features and offering to help in any way that I can. I take part in as many product surveys as I can, always making sure to mention accessibility as a major feature concern of mine. I speak to product representatives at conferences about the challenges (or impossibility) of using their product with little to no vision and possible solutions. I bring accessibility up in forums and blogs, often with a bunch of barriers thrown back at me about why designing an accessible pump or CGM wouldn't be possible—cost, aesthetic, functionality, technology, and so on.

It's easy to think of barriers. What I want to think of, and hope others will think of, are solutions. If I spent my life thinking of barriers I would go nowhere. I've lived my entire life thinking of solutions, and I want more than anything for the companies who manufacture diabetes products and provide diabetes services—and for the diabetes community who use those products and services—to shift their thinking in the same direction. I realize for many who are not familiar with accessible technologies it may be difficult to picture how some of these things could be accessible. So let me give some examples of possible solutions.

Picture a glucose meter that had a setting to enable a speech output feature, which would otherwise not interfere with the functionality of the device at all (like iOS devices). Picture an insulin pump with a meter-remote or PDM where consumers had a choice of whether to purchase a standard unit or one with a user interface designed specifically to be accessible. Imagine a CGM that used sound cues to render a trend graph on a musical scale and a series of ascending or descending tones to indicate arrow direction and intensity after announcing a blood sugar reading. Imagine diabetes publications were made available in fully accessible electronic copies at the same time they were published in print—including all tables, graphs, and pictures being accessible. Imagine all food packages, everywhere, had tiny bar codes that contained the nutritional information and ingredients and could be scanned and read aloud by an app on a smartphone. Imagine the breakthrough products of tomorrow—which are being developed today, as you read this—had accessibility considered as a top consideration as the product was designed from the ground up.

Imagine I and others with impaired vision could await the release of the artificial pancreas with boundless enthusiasm, rather than wondering whether it will be a tool we will be able to access and use safely and effectively.

The issue of accessibility, of course, encompasses a far wider field than simply diabetes. In order to deliver accessible online diabetes learning, the platform on which the content is delivered has to be accessible. In order to have an accessible insulin pump, the cost needs to be reasonable. In order to have an accessible nutritional database linked through bar codes and a mobile app, food companies need to be on board. Yet, accessible products and services do exist in other areas of life, but diabetes is lagging seriously behind. The most important factor is that in order for any of this to even be imagined, it has to be in demand. And currently, there is no demand. There is no outspoken disability cohort of the diabetes online community, as there is with parents and people with LADA and athletes with diabetes. There is no one writing letters and e-mails, flooding companies with questions and requests for accessibility. For the most part, championing accessibility in the diabetes arena is a very lonely battle.

Perhaps I am just ahead of my time. I realize that many of the solutions I've brainstormed here (and they really are just brainstorms—I'm no engineer) rely heavily on the advent of technologies such as the explosion in mobile apps and services. But there is a trend in accessible devices: they tend to be one or two generations behind the most recent devices, so that by the time there's an accessible insulin pump we will have moved on to something newer and better and, like the pumps of old, just as inaccessible, albeit in a novel and different way.

I realize that I live in, and will always live in, a sighted world. Those of us with visual impairments will always be the minority, and we will always have to find ways to cope and adapt in a world that wasn't designed for us. I hope, though, that someday I will live in a world where at least one product of each type is accessible. I'm not asking for a selection of 20 glucose meters or 5 insulin pumps to choose from; even just one would be a great stride in the right direction. First, companies need to decide that they are willing to design a product from the ground up with the idea that, just possibly, 20%* of their users will have impaired vision—and that those customers are just as important as the other 80% with near-perfect vision. And, for that, there needs to be a much louder voice than there currently is.

* Statistics from the American Foundation for the Blind.

2 comments:

  1. Wow Jen! I have read almost every post for today's D-Blog topic and yours is the one that resonated most with me. I don't have a visual impairment but I do work with and support many people who have a wide variety of challenges that make getting around in our society a constant battle.

    You captured it beautifully. I wish it wasn't this way but, at the moment at least, it is. Thank you for adding your voice to the choir of people trying to change that.

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  2. really interesting perspective. Thanks for sharing it!

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