What does it mean to be human? On the surface, it seems such a simple question, yet when one thinks about it, answers are not easily forthcoming. This is the first in a series of posts that will hopefully convince you to explore your own answers to the subject. For in my usual fashion, I have very few answers, but many questions.
We frequently like to throw the word ‘normal’ around, as if there is a neat and tidy answer as to what a ‘normal’ person really is. “Why can’t you just be normal?” says the teen to her parent (or possibly vice versa). “I just wish I could feel normal” laments the person who is feeling off-kilter. “That guy just isn’t normal” tends to get thrown around after blind dates (at least after the one or two I was on.) But is there such thing as ‘normal’?
This question started percolating after I went to the eye doctor for a check up and to finally get back into contact lenses. Towards the end of my visit, the doctor asked me if I had ever thought about corrective eye surgery. I was actually taken aback somewhat by this. I had always thought that my eyes were to bad for the procedure to be effective, but I was also very concerned about the procedure going horribly wrong and my vision being irreparably damaged. The doctor quickly assured me that I would be a great candidate.
At first I was thrilled! I missed waking up and being able to see, being able to see underwater and in the shower (without having to worry if my contacts were going to adhere to my eyeball or get flushed out with the rush of water.) To go back to those glorious days before I started wearing glasses in the 2nd grade would be a dream come true. However, after further thought, I began to have some pause about the surgery.
I wear glasses. That is who I am. I don’t know if that is how everyone sees me or if there are some other characteristics that those around me would ascribe to me before they got to my corrective eyewear. But the fact of the matter is, from my perspective that is who I am. A person who needs corrective lenses. I have spend a great deal more time in my life with them than without them. By accepting the surgery, would I be turning my back on those 27 years? Would I be saying that I wasn’t good enough then and that only now would I once again be a complete human?
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There is a segment of the Deaf Community which refuses to accept interventions that will improve or “normalize” an individual’s ability to hear. In their view, being deaf is not something to be “cured” of. Being deaf is who they are and to accept something such as hearing aids or a cochlear implant would essentially be a recognition that they are not good enough as they currently are. They see themselves as already being a complete person. They choose to accept themselves as they are and to live their individual human experience to the fullest.
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A few weeks ago, Sports Illustrated did a profile about Team Hoyt. If you don’t know them by name, you probably have heard their story or at least seen them featured on one of those inspirational billboards. Dick Hoyt has a son, Rick, who has suffered with cerebral palsy for 49 years. At one point many years ago, Dick decided that he would push his son in a cart during a race for charity. Since that time, father has pushed, pulled and lugged his son through multiple marathons, triathlons and other such feats of endurance. They have become a source of inspiration and hope for many. But while highlighting the good, the story also sheds light on the fact that this experience at some point has to come to an end. Both father and son have become much older and the road (or field or ocean) is not as kind as it once was to either of them. The story asks the question, at what point is it okay to stop. For me, the more interesting question is, at what point was it okay to get started?
At first glance, that question feels harsh, or at the very least, cold. Clearly, there is no way anyone should question such an uplifting experience. A father finding a way to bring ‘normal’ experiences to his son with some physical challenges. But if you look closer, the question increases in importance. These experiences are not without risk to both father and son. In the road races there are concerns for abrasions, fractures, head injury and other traumatic injuries among other concerns. What about during the swimming portions where death by drowning is a real concern? For the father, he is an adult and can make his own decisions about if the risks are worth the benefits. but what about the son?
For argument’s sake, let’s say that running one race can bring about awareness about how people with physical challenges can participate in ‘normal’ activities plus it is a great outpouring of love and devotion from father to son. Does that value still stay the same after two races? 10 races? 1,000 races? What if the father continues to do the races less because of the disability awareness and joy of his child, but because of the fame and adulation that gets showered upon him? Does the initial value still exist? At what point is the son not a human being in this experience, but instead reduced to a caricature of a human or a mascot? A gleaming talisman that does not exist for himself, but instead exists only so that other people can look at and point to him to gain inspiration and insight. Does this glorify or demean the son? If the son could, what would he choose?
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And therein lies the key, or at least one key. Choice. Maybe part of being human is the ability to choose. We don’t get to choose everything in this world, but we do get to choose what our response to the world is. Fight or flight. Be true to oneself or keep parts hidden away. Run in the race or stay at home. Rick Hoyt has a choice, too. For despite the fact that cerebral palsy has ravaged his body and given him little to no control over its functioning, his mind is fully intact and, at least according to the story, he has continually used his modified communication device to indicate that he is most definitely a willing participant in every race and experience that he undertakes with his father, deriving sweet joy from the wind whipping in his face. But what if Rick either couldn’t communicate or his cognitive abilities were also damaged? Would that then make him, and all others in vegetative or non-communicative states, lacking in humanity?
I would emphatically propose “No!” For even if the person cannot express their choices and desires, we recognize that their humanity mandates that we at least consider what course that individual would choose and then act accordingly. Would Grandma want to live on a breathing machine or would she want us to let her go? Would Billy want a feeding tube in place or not? These are questions that get asked all of the time, either explicitly or silently in the hearts and souls of a patient’s loved ones. From one human to another.
The question then becomes, what kind of a human do you want to be? Choose wisely….