Braille Monitor                          January 2019

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Inaccessible Medical Devices Have Life or Death Consequences

by Anil Lewis

Anil LewisFrom the Editor: In successfully dealing with blindness we talk a lot about alternative techniques. If I can’t see when the bacon is crisp, is there another way to tell? Yes, there is. If I’m pouring a cup of coffee, can I tell when the cup is getting full, short of it overflowing? Of course. When using equipment made for the sighted, we can often figure out alternative ways to memorize the buttons, learn the calibration of the knobs, or count clicks. Sometimes we can set the temperature of an oven if we know that each time it is started, it begins at a specific temperature and that each beep raises or lowers the temperature by five degrees. All of these techniques let us use equipment out of the box, but when we talk about medical equipment, the consequences of error are significant. If my oven begins with a temperature of 325, I try to set it at 450, and because I miss a beep I am at 425, this is usually not a disaster. A few more minutes in the oven means I come out with a clean knife. But if I am measuring an injectable drug, one missed beep may completely change the effect of the dose. Even this assumes that the medical equipment being used accurately beeps for each incremental change or that it beeps at all. Not all equipment does. Pressing a button to elevate the dose may cause an increase of one unit; accidentally holding that button a little longer often means that the unit scrolls more rapidly, so all bets are off in terms of the number that I have when I remove my finger. Again, the result is far worse than burned bacon or biscuits.

Blind people should not have to guess when it comes to settings on a piece of equipment that is digital. What can be displayed can easily be spoken. Whether equipment uses buttons or touch screens, we have examples of programs that allow blind people to use both. The quality of life for blind people is too important to leave to chance or even to the development of alternative techniques if we can devise them. When it comes to equipment that can determine life or death, a blind person should not have to be at the top of his or her game to figure out some innovative way to make a device for a sighted person work for one who is blind. Here is what the National Federation of the Blind is doing about this most insidious issue:

Diabetic retinopathy is one of the largest causes of blindness, yet the technology that allows individuals to monitor and cope with this disease remains fundamentally inaccessible to blind people. Blind people, as a subset of society, are also affected by other diseases like cancer but have no independent access to the technologies that help manage these diseases. Medical technology that allows individuals to independently administer dialysis and chemotherapy treatments in the home is inaccessible and creates an unnecessary dependence on others. The National Federation of the Blind is working to increase the accessibility of medical technologies so that blind people can live the lives we want.

At our 2016 National Convention of the National Federation of the Blind, our members passed Resolution 2016-16. This resolution highlighted the “Technology Bill of Rights for Individuals with Diabetes and Vision Loss” that asserts meaningful access to the same life-changing diabetes information, diagnostic tools, and treatments as are available to others. These rights should be universal to blind people regardless of their medical condition.

Blind people struggle to use the limited, makeshift tools and strategies available to us to care for ourselves, while the rest of the world is on insulin pumps and continuous glucose monitors that they can fully access safely and independently. Using workaround strategies in order to access medical equipment puts blind people unnecessarily at risk. We seek to remove this risk by making the technology nonvisually accessible to the blind through tactile markers, speech, large print, and/or Braille access. When done correctly, this is simpler than most people think and enhances innovation with little to no additional cost.

In January of 2018, we launched the NFB Accessible Medical Technology Working Group, a forum through which we can identify priorities and share ideas for increasing the accessibility of medical devices and apps, because unlike most other technologies, medical devices have life-or-death consequences.

Medical technology that can be used in the home, accessed using a smartphone app, and sometimes worn on the body empowers individuals with confidence, convenience, flexibility, and improved quality of life. These devices can collect and transmit information directly to medical professionals, eliminating the need for in-person doctor visits and reducing overall medical expenses.

It is imperative that blind people be involved in the process of making these devices accessible. Blind people interested in working on this taskforce should join our NFB Accessible Medical Equipment Discussion Group by visiting: http://nfbnet.org/mailman/listinfo/accessible-medical-equipment-discussion-group_nfbnet.org. As a member of this discussion group, you will be informed about our current efforts, be able to provide input and suggestions, and volunteer to assist with the evaluation and development of accessible medical technology. 

Through our NFB Accessible Medical Technology Working Group, we are seeking to establish relationships with manufacturers that will allow us to leverage their desire to develop innovative, life-sustaining medical technologies with our expertise in accessibility. Through this initiative, we are working to get ahead of the curve by encouraging the developers of these technologies to take accessibility into consideration during the design and development phase.

Manufacturers of medical technology interested in partnering with the National Federation of the Blind should email accessiblemedical@nfb.org with the contact information for your representative and information on your product. We will follow up to determine how we can work together to make your product accessible.

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