by Eric Duffy
From the Editor: This article is reprinted from the Spring 2014 Buckeye Bulletin, the newsletter of the National Federation of the Blind of Ohio. It was originally entitled “From the President’s Desk,” but it is much more than a way to open a newsletter; it is an honest reflection on what it means to deal with the realities of blindness beyond those we are comfortable with advocating. Here is what he says:
We in the National Federation of the Blind talk a lot about our philosophy of blindness. One definition of philosophy is a belief or system of beliefs accepted as authoritative by a particular group. On a personal level people also have a philosophy about how to live. This can include a philosophy about how to live as a blind person. Just because one says he or she believes in the philosophy of the National Federation of the Blind, the NFB philosophy does not necessarily govern all aspects of his or her life. There are many reasons for this.
One is that we are all a product of the society in which we live. Sometimes no matter how long we have been active in the Federation, we find ourselves falling victim to one stereotype or another about blindness. It is also possible to apply our understanding of the philosophy to a given situation in such a way that we are contradicting that actual philosophy.
For many years I have struggled with a serious sleep disorder. When I was in college, a psychology professor told me that research indicated that many people who had little or no light perception had sleep problems. Although I heard no more about this research, I continued to battle erratic sleep cycles. I went to a sleep medicine clinic and tried various drugs. None of them worked, and some of them had negative side effects.
Much later in life my family doctor told me that my body was most likely not producing enough melatonin, and therefore my body clock was out of rhythm. For some time I experimented with taking melatonin but achieved no satisfactory results. I was delighted when about four years ago I learned that Vanda Pharmaceuticals was researching this problem in hopes of developing a drug to treat it. The problem is known as non-24-hour sleep-wake disorder (non-24). Those who have the non-24 sleep wake cycle often find it difficult to get to sleep at night. Our sleep is often interrupted by long periods of wakefulness. As a result we often find ourselves falling asleep or very tired during the day.
I know this problem has affected my life in negative ways. On the other hand it does not affect many people with no light perception. The drug, Hetlioz, was approved by the FDA earlier this year, and it will be available sometime this spring. I have long said that I will absolutely be one of the first people in the country to get it when it comes to market. My doctor says he will prescribe it as soon as we know it is available.
What I have found surprising is the unwillingness on the part of several very bright blind people to acknowledge that non-24 even exists. These same people become upset when it is linked to blindness. I know that all too often doctors and other professionals want to attribute every problem in life to blindness. We certainly must do all that we can to resist this temptation on the part of society. But we must also be careful to acknowledge things that can be fairly and accurately attributed to blindness.
If the ability to see light triggers the production of melatonin and if the production of melatonin helps to control our circadian rhythm, it stands to reason that for those of us who have non-24, a drug that helps us produce melatonin might be beneficial. My blindness is the only reason I do not see light. I don’t want to have non-24, but neither do I want to be blind.
No, don’t think I am depressed, or that I hate my life as a blind person. That is far from the truth. I have learned how to live a productive and full life as a blind person. I could have chosen to feel sorry for myself and live a life of doom and gloom. Had I done so, most of society would have been none the wiser, for that is what much of the world still expects of us today. But the National Federation of the Blind gave me a different prescription, and I was eager to have it. It is our positive philosophy of blindness and a group of supportive like-minded Federationists who have changed how I deal with blindness. I have heard blind people say they don’t want to have to take a drug to deal with non-24. I wonder how that differs from those who say, “I don’t want to have to use Braille, a cane, a dog, or a magnifier”?
I don’t write this to promote Hetlioz. I do not benefit from the sale of the drug in any way. I am simply saying that it is okay to be blind and that, if non-24 is a part of blindness for some of us, that is okay as well.
Some people have been upset because they believe that the radio commercials sponsored by Vanda portray blindness in a negative light. I disagree. The commercials present a problem that is connected to blindness and tell those who are interested how to get more information. Non-24 is not a condition that we should hide from; it is one for which we should acknowledge and embrace a possible treatment.