Braille Monitor                                                 June 2012

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Living Well with Diabetes

by Mike Freeman

Mike FreemanFrom the Editor: Mike Freeman, president of the NFB Diabetes Action Network (DAN) and a member of the NFB board of directors, made the following remarks on April 1 at the NFB of Missouri fiftieth annual convention. This is what he said:

Everyone here is familiar with the B-word—blindness. Today I'm going to discuss the D-word—diabetes. But first let me say how honored I am to participate in celebrating the fiftieth anniversary of the NFB of Missouri. You—nay—we have accomplished a great deal during the past fifty years, and I am certain you and we will accomplish as much or more during the coming fifty years in our quest to achieve first-class citizenship for the blind of Missouri and for the nation.

I'm not going to bore you with a lengthy discussion of the causes and treatment of the various kinds of diabetes. Suffice it to say that diabetes mellitus (the technical name for the various forms of the disease) is a metabolic disorder that impairs or prevents most of the cells in your body from getting energy from the food you eat. This involves either the lack of insulin or the inability of your cells to use insulin efficiently to get energy to function. Insulin is a hormone made in the pancreas, a small gland in the abdomen.

I'm going to discuss how to live well with diabetes from the perspective of its social context. I believe that NFB philosophy has much to teach us about living with diabetes. We all know people who are ashamed to be blind. They try to hide their blindness, faking sight they do not have. We know that this is counterproductive. It blights the soul. There is no need for this shame. In fact, it is the essence of NFB philosophy that it is respectable to be blind.

But did you know that many people who have diabetes are ashamed of it? They suspect that having diabetes is their fault, and too many people (including some medical personnel) reinforce this notion, equating diabetes with gluttony. Many diabetics try to hide their diabetes. Worse yet, many diabetics deny (both to themselves and to others) that they have diabetes. As an African-American idiom has it, they do not "claim" their diabetes. Not only does this blight their souls, but the longer diabetes goes untreated, the more likely diabetics are to suffer the complications of diabetes—nerve damage, heart disease, strokes, and of course blindness.

Diabetes is nothing to be ashamed of. It is something with which we who have the disease must live. The only thing of which we should be ashamed is leaving diabetes untreated. All of us who are blind find ourselves euphemized to death. There are a myriad of terms for the blind and blindness, all which avoid the dreaded B-word and all of which show the discomfort of those using them rather than their sensitivity which, in reality, is not needed.

Similarly, diabetics are stuck with people-first language. We are told we are more than our diabetes (something we all ought to know anyway) and that terms like "diabetic" should be eschewed in favor of circumlocutions such as "people with diabetes." This is ridiculous. We don't say basketball players are "people of tallness," do we? Well, we do not need to avoid the word "diabetic" or the fact that we who have the disease are diabetics. We are definitely more than our diabetes. But diabetes is part of us. We are all familiar with the phenomenon of weekly news stories touting so-called cures for blindness, most of which do more for those publicizing these cures than they do for blind people. These cures emphasize the supposed tragedy of blindness rather than its normality. Moreover, most of us will remain blind despite these so-called cures.

Likewise we hear every week of new treatments for diabetes, some of which may have merit and all of which, it seems, need more funding for research and testing, especially since many of them have been tested only in mice or upon a few human subjects and only for a limited time. We cannot live on what the future holds; we must live in the here and now. Diabetes will be with us for years to come, and, if we have it, we owe it to ourselves and our loved ones to control it.

We who are blind are unfortunately familiar with organizations that raise money in the name of the blind. Some of this money helps us; some of it does not. But most of the fundraising is based on pity. We of the Federation deny to the core of our being this notion that the blind are to be pitied. Likewise, a great deal of money is raised on behalf of organizations dealing with diabetes. The Tour de Cure comes to mind. Some of this money helps. But it's hard to escape the notion that sometimes these organizations with their many events come to do good and end by doing well.

We who are blind are confronted by those whose notion of helping us is summarized by the slogan "fighting blindness." We of the Federation know that we don't fight blindness; we live with it. Likewise diabetics must deal with organizations whose slogan is "Stop Diabetes." While this may be laudable, it's not going to happen for most diabetics in the foreseeable future. Hence we who are diabetics must instead live with diabetes, and the good news is that we can live well with it. We can live full, normal lives.

As our DAN brochure says, life with diabetes need not be complicated. From the foregoing the connection to Federation philosophy should be evident. Federationism is a can-do philosophy that affirms the dignity of the blind. The same philosophy of dignity and taking charge will serve diabetics as well. To bring this down to a personal level, if you are blind and have diabetes, I believe it is important that you live your Federationism and that you know you're OK as a blind person by taking care of your diabetes. For, if you don't think you're OK as a blind person, it's likely you won't think it's worth it to take care of your diabetes. Don't fall into this trap. Life is an adventure worth living to the max as a blind person, as a diabetic, or as both.

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