by Donna Blake
As I sample the literature written on the diabetes epidemic, I often see the much-quoted phrase, “Diabetes is the leading cause of blindness (age 20 -75) in the United States.” With the increasing number of both type 1 and especially type 2 diabetes cases (particularly in children), it amazes me that there is little or nothing written by healthcare professionals regarding the healthcare issues of blind patients. I suppose the reason is as complicated as the situation that arises when a blind patient walks into an eye doctor’s office—other patients seeing the eye care professional may then think the doctor is not good. In many healthcare settings, blindness is considered a medical failure, and that perception becomes much worse when the blind person also has diabetes. We know our doctors tried the best they could, and many went the extra mile for us patients, without success, and we are grateful for that; but where does this leave us with our ongoing healthcare? No pun intended, but we’re left in the dark.
When I first lost my vision, and could not read the little numbers on my insulin pump or the big numbers on my blood glucose machine, I had no resources to turn to for help. My eye doctors didn’t even know about CCTVs (video magnifiers), and that was in 1996. Neither my eye doctor nor diabetologist had a notion that talking blood glucose meters, Count-A-Doses (a tactile insulin-filling device), or other adaptive items to help me to control my diabetes without sight, even existed. I had to depend on a four-year-old to read numbers so I could pump in my insulin and measure my blood glucose.
I went through countless diabetes publications and found no written literature about patients having diabetes complications, or even from other non-diabetic causes of vision loss. (Yes, people with diabetes can develop other eye diseases similar to those in the general population.) Also, I found no resources for people who were already blind and then developed diabetes later in life. I then turned to the nation’s leading diabetes organizations, and none of them could give me an answer about what I could do. None of these organizations encouraged me at all.
It was only by chance I found out about the National Federation of the Blind (NFB). Someone gave me a NFB card, and I called the local chapter, which promptly sent me a copy of Voice of the Diabetic. It was through this publication I learned that some blood glucose meters had adaptable plug-in voice synthesizers, items such as Count-A-Doses existed and there were other items which could assist me with my diabetes management. However, despite this great and invaluable resource, I found nothing written regarding people who were blind and using insulin pumps. (Editor’s Note: There have been a number of articles for, and by, blind diabetics who successfully use insulin pumps. My survey, "Many Blind Diabetics Successfully Use Insulin Pumps," is also available as a chapter in the NFB publication titled Diabetes Action Network Articles, available free in large print or four-track audiocassette from: Materials Center, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; website: www.nfb.org)
Having been on an insulin pump for many years, I had to “blaze my own trail” so to speak. Fortunately at the time I was losing my vision, the company whose pump I used was coming out with a new model, which offered a lighted screen and an audible beep, to help program in the amount of insulin one needed (if you were in a poorly lighted area). Although they gave me more access to a tool I need to manage my diabetes, these new features certainly were not included to help a blind person with diabetes use this device.
My endocrinologist gave me a prescription for the newer pump, and this turned out to be a great asset. Though the new pump allowed me to give my meal doses of insulin with the sound of a beep, I could not use any of its other features. I still needed sighted assistance to program the pump, and make the changes in programming as my lifestyle changed and my needs changed. All of this happened six years ago, and since then there have been three newer model pumps developed by my pump company. Still, two-thirds of a pump’s features are not available for a blind user. I don't see how a blind user is supposed to even set up the pump independently—and I have made many calls to the company explaining the need and market value for such improvement.
It is great that we can make cars speak, watches speak, computers speak, elevators speak—yet we cannot make such an important device audible? Even the epidemic increase in numbers of patients with diabetes and blindness has not convinced the pump manufacturers to improve their products to give us access to all the features, especially the ability to set it up independently. Not only is this true with pump manufacturers, but many of the blood glucose meter companies, as well.
Having been on a pump for so long, and using it both sighted and blind, has led to many phone calls from both potential pump users and healthcare professionals. Both professionals and patients alike have basic questions regarding how someone blind could use a pump and perform the necessary basic maintenance pump use requires. I have spoken to well over 25 people regarding the various issues, and how I have overcome challenging situations with my pump. Due to the lack of effort toward making a pump accessible to people who are blind, I put together a small reference guide to assist people in setting up and taking care of a pump site as well as some basic tips for operating the pump. I have also written a list of concerns someone or someone’s healthcare provider may have to consider when evaluating a pump as an appropriate tool for personal diabetes management.
If we are not to receive help from the manufacturers regarding their products, then we need to place pressure on our healthcare professionals to require the medical industry meet our needs. The ADA was passed to grant equal access for people with disabilities. Equal access in healthcare is a right for all, and manufacturers should understand the importance of accessibility for those of us who depend on their products. In order for blind people who have diabetes to live independently in our communities, we must demand that both the healthcare providers and the products they recommend meet our needs.
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Voice Formats
Voice of the Diabetic is offered in two formats: standard print, and 15/16 IPS audiocassette ("talking book" speed). Anyone who is currently receiving the Voice in print and having difficulty reading it, may receive it on cassette at no charge. Voice tapes require the special tape player available free to the legally blind from Regional Libraries for the Blind and Physically Handicapped, which can be obtained by telephoning the National Library Service at: 1_800_424_8567.
Periodically we receive requests for the Voice in Braille or large print. It is not available in either of those formats at this time. View the Voice on the World Wide Web at: www.nfb.org/voice.htm