Diabetes educator Ann Williams spoke at the NFB DAN meeting. Here is an excerpt from her remarks:
If you’re a blind person with diabetes, you don’t need me to tell you that there are not enough well-designed tools for blind diabetics. You already know that far fewer choices are open to you for diabetes self-management than there are for sighted people. You know that even if a really good tool exists for an important diabetes task, like blood glucose monitoring, it’s likely to exist as a sole choice, not as one of many good choices.
But a group of people like you can improve this situation. You can speak for yourselves.
I have been a diabetes educator since 1987. My first job was in a blindness rehabilitation center—Cleveland Sight Center—so I have worked with blind people from the beginning of my professional involvement with diabetes. I went to my first big, national, diabetes convention, the Annual Meeting of the American Association of Diabetes Educators (AADE), in 1988. At that convention, and at every convention I have attended since then, I, and other diabetes educators who work with a lot of blind people, have gone through the exhibit floor asking manufacturers of diabetes products to make those products accessible—especially blood glucose meters, insulin pens, and insulin pumps.
The result of all this effort has been unimpressive. Generally the companies express some interest, and sometimes they make a few promises of change, but they do not follow through with action. Sometimes at the convention the same people at the same diabetes companies will listen politely as we have the same conversation we had the year before, and the year before that, and perhaps even the one or two years before that. There is one employee of a particular company who now hides when she sees me coming to her company’s display!
A few people have been more straightforward. They explained to me that their particular company doesn’t see access for people with disabilities and diabetes as part of their company’s purpose. They think they should work to serve what they call “average people” with diabetes, what they think of as the 90 percent of people with diabetes who have no complications.
But last year was different. I did my usual routine, but Tom and Eileen Ley, who are blind, were also there. They made the rounds on the exhibit floor, going to the same diabetes product manufacturers that I have been going to for years. They asked them all, “How are WE going to use your product?” They engaged in conversation, and let themselves be known as people, not just statistics. The results were amazing—a partnership between NFB and DDI around improving the Prodigy Voice meter, and an insulin pump company seriously considering how to make their pump accessible.
Now, I’d like to think that all those years that I, and other diabetes educators who spoke to these companies about the need for accessibility, prepared them to hear Tom and Eileen. But it was even more important that Tom and Eileen showed up in person and spoke for themselves. In fact, as a general rule, it’s almost always more effective when blind people speak for themselves, instead of having sighted professionals speak for them. And I think the reason is not any ill will, but simply lack of knowledge and understanding. I notice that most sighted people who don’t have much contact with blind people cannot imagine the access problems that blind people face when they want to do things for themselves. This lack of imagination is utterly dispelled when real blind people stand in front of them and explain their situation. Real people, not statistics alone, are effective in promoting real change. And of course, the best situation is collaboration between diabetes care professionals and the people they serve. So speak for yourself. Let people know how it really is for you, and how what they do can change your experience. The National Federation of the Blind Diabetes Action Network can help too, by showing you all the ways that you can do for yourself, and speak for yourself.
About the Author
Ann S. Williams is an RN, with a PhD in Psychology, and has worked as a diabetes educator for 20 years. She has specialized in teaching independent diabetes self-management for blind people and writes and speaks frequently on this topic for other health care professionals. She was the founder and past chair of the Disabilities Specialty Practice Group of the American Association of Diabetes Educators, and remains an active member of that group.