Richard Andrew Young's Essay on Why He was Glad He was Not Aborted
CF and Abortion
[Note: Richard emailed me this essay on 6 September 1997, but he said he wrote it the previous March. This is the full essay as he sent it to me.]
Individuals with cystic fibrosis and their relatives and parents are often forced to confront the reality of difficult and sensitive decisions, such as abortion, making, for us, a reality out of a highly-charged, emotional, but nevertheless abstract debate. It is not uncommon to hear the suggestion that parents who knowingly have children with CF are immature or misguided, and many make strong economic, social, and personal cases, arguing, at least implicitly, that it would be better to abort children with CF and other debilitating birth defects. Certainly, there is logic and sincerity in this argument. However, I believe that some important considerations are usually left out of both sides of the debate. I would like to present the following ideas on abortion and CF -- or other adversities -- because I have not seen them voiced in any forum. I do not do so dogmatically, or to condemn those whose views might differ, only to look at an aspect of this most difficult, personal, intimate question that I believe has not been adequately considered.
I was my mother's first child, born in 1974. I was diagnosed with CF at birth due to meconium ileus. My mother had four other children after me, and was strongly encouraged by her doctor to abort all of them and be sterilized. My mother had a second child less than a year later, who also had CF and has since passed on. When my mother became pregnant with my youngest sister, and fifth child, her obstetrician was so angry he demanded her to abort, shouting at her. (Writing this now, I cannot even stop the tears, considering the abuse my beloved mother was put through by these arrogant, heartless men.) When she refused, again, the doctor terminated his relationship with my mother and she was forced to seek another obstetrician. My sister was born in 1980.
No doubt thinking they were gods, the doctors believed they had both the best interest of my mother and sister in mind. The thought among these self-deified doctors that CF -- and those suffering from it -- should not be perpetuated, carried beyond birth. The pediatricians my brother and I were taken to insisted there was no hope for either of us. They did not prescribe specialized CF treatments for us, not even enzymes. They never directed my parents to a nearby CF Center, knowing it was there, but falsely assuring my parents that they were competent to do whatever little could then be done for CF. The effects of not having CF care for the first years of our lives led to great consequences for my brother and I, both in lung damage and developmental delay. My parents were young, in desperate circumstances and naive about such things, but in today's litigious climate they would, no doubt, be millionaires.
This raises the fundamental issue which has been overlooked in the abstract discussion over abortion and chronic illness. I am glad that my brothers and sisters were not aborted. So are they. And their friends and relatives and acquaintances. They have made the world richer by their existence -- yes, even my rebellious, unemployed 19-year-old brother has people who appreciate him and are glad of his existence. Unlike the "omniscient" doctors, I do not think the termination of the lives of my siblings was worth the uncertain risk -- and a relatively small risk, at that -- that they would have CF.
The question, then, is this: Is it better to live a life with CF, or not live at all? Would it have been better for my brother, who suffered immensely in his ten years, to have not lived? What of the joy and love he experienced? What of the many, many hearts that were softened and the great humanity so many learned because of his experience? If he, or I, or any of us, cease to wish to live, or wish we had never existed in the first place -- if we feel, as those who presume to know for us, that our lives are to difficult and not worth living, that it is cruel to be "forced" into life with such adversity -- then why do we not take our own lives? I will tell you that there have been times that I have knelt and in tears and supplication begged the Lord to take my life, because I was so tired of the struggle. But never at any time have I thought to myself that I would have been better off not existing, that I would have been better off torn to shreds by the abortionist's tools in my mother's womb, reassembled in a bowl to make sure they got it all, and disposed of in a sanitary manner.
I was particularly affected by this argument at the age of seventeen. A high school honors government class I was in considered the question of abortion. I was quite surprised when one student, who was irreligious and could be counted on for his consistently liberal opinions, was a staunch, outspoken opponent of abortion. His reasons were quite selfish: his mother had almost aborted him. Until this time, I had been quite ambivalent on the subject, thinking that abortion was not a positive social norm, but that government prohibition was bad policy. Now I have realized that it is more than a mere question of public policy or medical regulation, a question of what is best for "society" (whatever that is supposed to mean), but a fundamentally personal question dealing with the most direct and intimate aspects of true humanity.
I have often wondered what pain and suffering the child of Jane Roe would encounter if she knew her mother had wanted to terminate her life -- and the great lengths she went to do it. I fear the same for countless others who were in this position, but, thankfully, spared.
I am currently seeking a master's degree in public policy. Political philosophy and ethics are particular interests of mine. I have read widely and extensively among the arguments for and against abortion in all their subtleties and variations, from the simple emotional debate that goes on in public forums, to the most arcane and complex questions of metaphysics and meta-ethics -- everything from conservative "pro-choice" arguments to quasi-Marxist, feminist anti-abortion theory.
I think, though, that the fundamental questions on abortion, the more personal aspects above the sanitized abstractions of debates that do not consider the concrete impact on humanity, has to do with our own being, the question of what it is to live the humane life, and whether we have the right to decide the fate of those who are conceived with terrible deficiences, and argue that it would be good, or at least permissible to prevent their misery and burden by abortion -- to put it starkly, to say, though more gently and less directly, that they would be better off dead. Should not, and is not, the individual the only one who is truly able to evaluate the value and worth of his life? So long as he does not coercively interfere with the attempts of others to live their lives, then let him decide when and if he chooses, let it not be decided for him -- let him not be coerced.
It may be argued that I am too simplistic in only considering the future point of view of the child, that the parents also have a great interest in their child, because a child is a great source of trial, heartache, stress, time, and financial drain. Having seen my parents struggle and sacrifice and suffer, I know intimately that the decision to raise children, rather than abort them, was more than a question of simple convenience on their part, as many anti-abortion advocates would argue, trying to cruelly discredit their opponents. Still, does not the value of a human life and the right, by the nature of our being, to choose our own ends -- life or death -- trump most, if not all, concerns of those who bring the child into existence and created his will, his soul, by their own consensual act and without obtaining his consent?
Let me preface this next thought by saying that I am uncomfortable with the argument that the thoughts and interests of others, who have not been literally coerced into a position -- parents, "society," etc. -- need be considered in basic questions of individual human existence and autonomy. I do not believe that any individual or group of persons has the right or ability to decide what the amount of pain another suffers or what level of social cost he creates justifies a decision not to allow him the opportunity to live and seek a meaning to his own life. I do not truly think that the opinions of others, the "good of society," justify others in determining, by coercion, the course of any individual. After all, is individual life not more valuable than the great hardship and trials, though they are very great, of those who chose to have children, and thereby accept the veryal, if remote, possibility that the child will be a "defective"? Is there a price in "social" resources that can be placed on individual life, such that crossing a threshold justifies the denial of life? Or, in other words, is life not priceless?
Because of this, ultimately I reject these social arguments -- either for or against abortion -- as arguments incapable of bringing an answer, whatever peripheral use they might have. Still, it is a pressing question, and my abstractions mean little in the face of life's trials and sentiments. Thus, putting aside questions of social costs, I still ask an analogous question about the meaning and the value of individual life, to address those who would consider abortion because of the great hardship the parents face: if my mother had aborted my brother, and saved herself, supposedly, great suffering and burdens, thereby the lives of many would be far less rich, far less in touch with the gentle, spiritual aspects of themselves -- and hers, too. A great deal of suffering would have been averted. Yet, so too would have a great deal of goodness, and the true compassion and understanding that come from such suffering. As C. S. Lewis wrote: I do not think that God cares that we are happy, but rather that we love and are loved. More importantly, though, is it those who are affected by those with CF, or is it those with CF and other terminal illnesses and disabilities themselves who are to be considered, to be given the decision? Is it not obvious that the individual life trumps all other considerations? Thus I reject all arguments that argue for or against abortion with "the good of society" as their fundamental premise. Men do not live their lives collectively, but individually -- as Isabel Patterson wrote, though the sun shines, a man can only see it with his own eyes; a blind man cannot see by community or through "society."
Many have been called on to suffer much in this world. Yet, we continue to struggle for life and existence, to fulfill our nature as human beings. Nevertheless, there are those who judge others before birth, and at the end of life, and often in-between, saying that their "quality of life" is not adequate, that they would be better off dead. Indeed, we can say about countless people, that there are fates worse than death -- or, at least, fates that seem to us, the untouched outside observer, to be worse than death. So many have said that of, for instance, the victims of Nazi concentration camps, yet those who survived would not agree --Viktor Frankl, the great psychologist and philosopher, who developed many of his principles while suffering in just this manner, would be the first to testify of this fact. It is not for us, for anyone besides those who are in the position of suffering, to decide this question and carry out the decision. No matter what the "cost" and "burden" to society. I put "cost" in quotes because, unlike the observable and measurable economic costs of those who suffer, the true cost of terminating them or those who could suffer is never known, in monetary terms or the far more important terms of subjective experience in their lives and the lives of those they touch. To hold otherwise is to put limits on the value of human life.
While suffering plays an important role in this question, and it is often the true, sincere desire to avoid suffering for someone else (even if such a concern is, as I have shown above, misplaced) and oneself that motivates the kinds of decisions we consider here, yet is not suffering a question of degree and not kind? My suffering and difficulties are not fundamentally different from those of others, but more frequent, deeper and poignant than some. And many have lived, and do live, who are far worse off than me. Where is the cut-off, the magic line, where it can be said a child with these challenges should live, but it is permissible to terminate one in a worse condition? Such an arbitrary standard is a warning sign that we stand on shaky moral and philosophical ground. Furthermore, if it can be determined during gestation whether one should be terminated for whatever reason, why can it not be determined a few moments -- or years -- later, that someone should be terminated for his own sake or those about him? Another arbitrary cut-off --where is the magic line in time? In our Western society, those lines, having been drawn when they never should have existed, are gradually being erased -- but this time, rather than restoring the sanctity of life, they make killing more and more permissible.
If it must be decided if a life is worth living, then let us wait a few years and allow the one who lives the life -- the one who most intimately, and only truly, knows his position -- decide. I cannot wish to deny anyone else the chance that I had. Let everyone decide for himself, and no others, whether life is worth living. I make this argument, then, because life, and individual life, is the ultimate value which I seek. As humans, we are forced to achieve ends to survive, but there is only one ultimate end: life, whether one sees it evaporating in this sphere, or continuing into spiritual realms.
I cannot wish that I did not experience the joy and adventure of living -- and because of that, the great pain and suffering and uncertainty that of necessity comes with it. If suffering is a question of degree and not kind, then to use this criterion, assuming the conceit that we can tell how much another truly suffers and what the subjective worth of his existence is against that, is to draw a line without reason. I am glad no one drew the line for me, but let me draw it for myself, that I was given the choice to decide whether my own life was worth living. I am glad that my brothers and sisters were allowed, also, by the courage and faith of my parents, to decide for themselves rather than having megalomaniacal, insolent doctors decide for them, whether by sterilization or abortion, on a 25% chance.
I cannot support the policy of aborting unhealthy children because to do so is a metaphysical attack upon my own existence. Therefore, I cannot argue in good conscience that any others be denied the privilege I have had.