by Gary Wunder
Readers of the Braille Monitor know that what they find in this magazine generally falls into one of three categories: reports of what the Federation is doing, other happenings in the field of blindness, and firsthand stories about problems blind people have faced and how they have dealt with them. This piece is different because it speaks to something we must think about, rather than something we have long since discussed among ourselves, arriving at a decision that reflects our collective experience. In short, this is an editorial. What follows does not instruct readers on Federation philosophy, attempt to lecture on moral rightness, or pretend that this issue is like others and therefore has been clearly resolved in Federation tradition or policy. Instead it is a plea for you to search your heart and soul, to use your rational mind, and to help us decide what we should communicate to the public about what it means to be blind.
Sometime in December of 2012, middle-aged deaf twin brothers in Belgium chose to end their lives because they suffered from glaucoma, which would inevitably lead to blindness. They were supported by their family and assisted by a doctor who described their last hours by saying that they both drank coffee, dressed themselves in new suits and shoes, waved to those around them, and smiled as they received a lethal injection. Euthanasia, the practice of doctors actively participating in the death of a willing individual, is legal in Belgium, but normally requests such as the one made by the twins are honored only if a terminal illness is causing significant pain. The doctor, the twins’ brother, and the parents have all agreed that no pain was associated with the illness that would eventually destroy their vision. According to a brother, the family tried to talk the twins out of ending their lives but eventually consented when they decided the twins were resolute in their decision.
The surprising and alarming thing that many Federationists observed in reading the coverage was reporters’ and commentators’ passive acceptance of the twins’ decision to die because of the prospect of becoming blind. Certainly the reality most of us experience makes us as reluctant to face death as our sighted friends and neighbors, but nowhere in this coverage could one find the slightest suggestion that blind and deafblind people have any quality of life. Nowhere was there a contrast between the life the twins thought they must avoid and the life many deafblind people live.
Let us admit from the outset that we do not know much about the lives of these brothers. Although it was not clearly stated in some of the earliest articles that appeared, later ones suggest that the twins had other medical complications that made it difficult for one or both of them to sleep. One article suggested that the twins could communicate only by using a language that they and their family had developed, and it is unclear whether this presumably visual language could have readily been adapted to a tactile form. We do not know whether the twins knew how to read and write in the conventional sense and whether their communication with a self-developed language was a matter of choice or of not knowing the Belgian equivalent of American Sign Language.
With these questions, and perhaps fifty more that will remain unanswered, it still seems fair to ask whether a choice to die rather than face blindness is rational and defensible. Washington and Oregon recognize terminal illness and suffering as reasons to consider allowing a citizen to take his or her life. Courts have even upheld the rights of several severely disabled people to refuse treatment that would extend their lives on the grounds that they are so disabled that their quality of life would argue against intervening to save them.
State-of-the-art medical practice forces us to confront possibilities that go to the root of our most strongly held beliefs. What is blindness, and in the broader sense what is disability? What should the people involved be expected to know about blindness before the state is willing to sanction death because of it? A medical doctor may be qualified to predict the loss of eyesight, but is the medical profession well suited to judge blind people’s quality of life? The profession has not shown that it knows much about rehabilitation and has failed to offer much in the way of encouragement to people once one of its practitioners has determined that he or she can do no more to save a patient’s vision.
For the last two decades the world has been fascinated by analyzing DNA and decoding the genome. Medical science can now conduct prenatal testing to determine the likelihood of several disabilities, some of which can result in blindness. When one of these tests indicates that a child will be born with a disability, a genetic counselor gives this information to the parents and talks with them about the choices they face. As it is with doctors and nurses, so it is with genetic counselors: they understand the diagnostic tools that can reveal a disability, but few of them have any life experience or education that will lead them to accurate conclusions about what it is like to live as a disabled person or to be the family member of one. In more than 90 percent of the cases in which prenatal testing is done and reveals the likelihood of disability, the decision of the parents is to abort the fetus, a scary statistic for those of us who believe that most disabilities do not preclude an acceptable, enjoyable, and enriching quality of life. Without treading on the rights of would-be parents to take advantage of what medical science can offer them, is it reasonable to suggest that the counseling they receive include not only a discussion about the likelihood of a disability but information about that disability from the perspective of people who live with it? Should people making the decision of whether or not to bring a life into the world at least consider the experience and opinion of blind people and their families that life is as sacred and meaningful to us as it is to any other human who has walked the earth and fretted about the day when he or she will walk no more?
It can be dangerous to see everything that happens in the world as a slide down the slippery slope to oblivion, but surely it is reasonable to sound an alarm when blindness can be used as a reason to end one’s life or terminate a pregnancy. Unchallenged, might the assumptions underlying these actions someday be the basis for determining what kind of life-saving procedures will be used for you or me? If I am in a hospital suffering from pneumonia, I don’t want my blindness to factor into the decision about the quality of my life and to what extent medical practitioners should try to save me. If I suffer kidney failure, I don’t want to be placed lower on the transplant list because someone believes my quality of life is less than that of a person with normal vision. The message we work tirelessly to send to society about our capabilities has traditionally been motivated by our desire to participate in the mainstream of life: to be educated, trained, and allowed to participate as fully contributing citizens. How close might we be to the time when the message we send to society must be to make the case that we deserve a chance at life and deserve to receive every medical procedure to enhance and preserve it?
People wishing to read more should study articles by Dr. Adrienne Asch, a bioethicist who is blind, is an active member of the Federation, and is committed to seeing that these discussions have a disability perspective. Two articles will serve as a place to start: “Recognizing Death while Affirming Life: Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life?”; and “Disability, Bioethics, and Human Rights.”
Most conditions that cause blindness do not result in lifelong pain, are not terminal, and need not result in a diminished quality of life, as long as people receive effective training and opportunity. It would be hard to find someone willing to argue that blindness is a superior characteristic, but my observation is that most blind people are as grateful for their lives as the sighted are for theirs. Shouldn’t those of us who are the experts on living with blindness be the ones educating hospitals and their ethics committees, making presentations to medical students as they matriculate, and getting published in journals read by doctors, bioethicists, and genetic counselors? While all of us can enthusiastically support the efforts of the medical profession to increase longevity and improve the quality of life, shouldn’t those of us who are blind take a dim view of allowing blindness to be a factor in determining whether we get a life or how long that life will be?