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“I’d rather be dead than blind…”
19 Jan
2013
By 2020
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By Randy Pierce

“Although the world is full of suffering, it is full also of the overcoming of it.”
Helen Keller

While the much more publicized Mayan “end of the world” did not arrive in December of 2012, a pair of identical twins in Belgium sipped a final cup of coffee together. They waved goodbye to family and succumbed to the lethal injection which legally ended their 45 years of life together. In allegedly rational minds, the two deaf twins had learned they were going to become blind and could not fathom sufficient reason to continue living. They applied for and received consent for euthanasia.

I have little doubt that the topic of euthanasia is a sensitive issue with many strong opinions–I do not intend to address them at the moment. My observation here involves the terrible perception of blindness and its impact which would inspire someone to choose death instead.

I am well aware of the very real challenges to transitioning to blindness as well as being blind. I’m aware of many misconceptions as well. Most imagine the situation as far more dour than I perceive the reality, though interestingly some find that I make the experience look sufficiently easy that they perhaps underestimate the challenges involved. The reality is that each person confronted with challenge must come to terms with their approach in their own fashion. They will likely have to manage the results of the choices they make at least as powerfully as they manage the challenge itself.

I can say with humble certainty that my initial belief of my impending blind experience was far more devastatingly tragic than my reality. I am glad that I had the courage, strength and support to push myself forward and learn the skills necessary to make my blindness only a part of my life and not the defining aspect.

It is true that nearly every day I wish that I could see again. It is also true that I would choose blindness for myself, even believing it would be permanent (as is likely), rather than give up the lessons and positive experiences blindness has brought to my life. I’d like to believe some of those would have come through other avenues, but the quality of my life has such high value to me that I would preserve it with blindness over sight and the uncertainty of those lessons.

I hope most days I show clearly by example for those with vision to observe fully that life with blindness has as much rewarding potential as life with sight. I’m sorry that message wasn’t strong enough to convince these twins they had more to contribute and experience in this world if they only chose to do such. I know that a deaf and blind woman by the name of Helen Keller certainly helps inspire me to believe in the potential they lost with their fatal choice.

“I long to accomplish a great and noble task, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker.”
Hellen Keller

4 responses to ““I’d rather be dead than blind…””

  1. SJ says:

    Randy, a major piece that you nearly gloss over in your article, however, is that these twins were already deaf, so being blind would have left them essentially exactly as Helen Keller. Not that they made the correct choice, but their life circumstances and reason for their choice went well beyond just blindness. In fact I’m not sure they would have even been granted the legal permission if their situation was blindness not coupled with deafness. For example, in your situation, you probably have text to speech software that allows you to hear these comments, however, that is not something available for the twins. More accurately they chose death over being deaf and blind, rather than choosing death over being blind.

  2. Randy says:

    No doubt that the additional challenge of being deaf and blind is significant. They had already managed to live seemingly high quality lives despite the deafness so I tend to believe they understand the nature of challenges. They have probably adapted their lives in many ways to enhance the experience and without a doubt there would be some significant initial quality impact to their lives. Maybe more than was sufficient to balance the quality of life equation for them. I am honestly unaware of how much they explored the impact and solutions to experiencing a high quality life with their prior challenges and the new change to impending blindness. Again, not suggesting I know their best course of action though I am suggesting they may not have fully understood their best course of action because they made their choice potentially on perceptions of what that experience would be like.

    Taking your example, yes I do use text to speech software for listenign to these posts on my computer. There are ways I could do it by touch with braille if I wished as well. The work of Hellen Keller and many others before her and since have very aptly demonstrated the potential for high quality in deaf-blind lives. This doesn’t mean for a moment that it would have been the case for these twins. I know that accept that and personally support understanding for each person’s management of their own lives and challenge. What I do know is that the perception of blindness is often significantly in error for many people and for most folks that’s not an issue they’ll ever need to evaluate directly in such a grand scale. All of my friends, family and contacts will of course have relevant perceptions as they’ll use those to evaluate our interactions and ultimately I hope to help many challenge and question the very nature of anything we haven’t experienced but for which we develop strong opinions…and particularly when we let those perceptions have further consequences that may have been appropriately prevented.

  3. Meresa says:

    Randy, you sound an awful lot like the Padre Francisco (the quadriplegic priest in Mar Adentro). Not everyone’s life is the same as yours. The twin’s deafness already isolated them to a profound degree. Losing their sight would have ultimately cut them off from the world, and each other. Not everyone with profound disability has a loving family for support. Becoming disabled, particularly later in life, can compound the isolation to an unbearable degree. I am gregarious, but my line of work keeps me working alone for 8-10 hours a day. While I can drive, I can still hope for a better job with more personal interaction. Were I to lose my vision and ability to drive, that I would become trapped in this life of isolation, with little hope of escape. Life would not longer be a gift. Indeed in my current situation it hasn’t been for some time. What gives me hopes is the possibility of it being temporary. If it were to become permanent then yeas I would choose to end my life as well. Losing my independence, and having no one to depend on would not be a life worth living to me. I support the twins in their decision.

    • Randy says:

      Hello Marissa, I’m sorry your comment slipped past my attention for so long. I tend to support the notin that each of us has the right to choose the course of our life and so would support your decision as I would support the twins decision. This does not mean I think each of those decisions for every individual is always made with the best information or in the best fashion. You suggest the twins would have been “ultimately cut off from the world.” That’s your opinion but whether it’s true or not is certainly up for debate. There are many deaf and blind individuals who are not cut off from the world as you suggest would be inevitable. This really was the essence of my point in the original article some five years ago. Making critical decisions on perceptions and beliefs is certainly something I find comfortably within people’s rights for themselves but not the best course of action and not the one I would hope to choose for myself. I want to make as many of my decisions as possible based on things I can confirm by real and reasonably thorough exploration. In the example of the twins, could not the same decision not have been made with the actuality of blindness having caused those fears and perceptions to have been realized rather than when they were simply fears and perceptions?

      In your own example you have a confident belief and you might discover you are correct in that belief. I never for a moment suggest each person must reach the same conclusion about blindess as I have made. I do note that I would have joined their perceptions before going blind and I discovered something different. In regards to the support systems, I hear this brought up often and I respect it tremendously. It is true that I am particularly fortunate in how strong a social support network exists around me. I tend to believe some part of that is not coincidence. Certainly I understand many people face situations which make those challenges worse in many ways. I know that my initial responses to my blindness put my own social community at some risk. How we interact with our communities influences significantly how they will interact with us. Exploring ways to adjust my approach, different ways to educate, advocate myself and others has been a part of my growth to help on the journey. A journey of growth has kept my life mostly moving in ways which work for me. While this may not be the case for everyone I think there is often more potential for this than many perceive, especially in the midst of significant change or challenge.

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