You Shouldn’t Have Been Born, Caleb Jones

What happens when you’re told that you were a mistake, that you shouldn’t have been born, and that your parents were selfish to allow you into this world?

One of my dear friends, Caleb Jones, has been forced to face that question head on in the last few days and weeks. His thoughts on struggling with Cystic Fibrosis made me stop. I’ve known Caleb for the last few years, we’ve roomed together, played soccer together, and (in the tradition of southern-born men) shot guns together. Despite facing some unique challenges, Caleb lives life with an intense fervor and zeal that is inspiring.

And he never complains.

Please lend Caleb your eyes for a few minutes, I promise it’ll be worth it.



__________________________________

How should a person respond when they find the pros and cons of their very existence being debated? I found myself in this position as I read this article. A mother asking for donations for her child with cystic fibrosis, a hereditary genetic disease, is met with disgust from her neighbor and told, “There’s no need for you to keep having these children…there’s a test for that, you know.” Apparently this viewpoint is widespread: the belief that children with cystic fibrosis are dead weights on society and that civilization would be better if this problem was avoided from the start with prenatal testing and pregnancy termination. In essence, many believe it would be better if these children never lived. It would have been better if this problem was avoided from the start.


I am one of the 30,000 Americans who live with cystic fibrosis, and it is difficult to adequately describe how I feel after reading this. On one hand, I have never heard this sentiment verbalized in my presence. I was never told that I should not have been born. Understanding and support is the sentiment I feel from others. In that sense, this specter of insult and degradation is far from me. But the whispers of strangers, and the words meant behind the words spoken reveal much. Virtually no one will say that a group should be killed because of their handicap or condition, but many will say that prenatal testing can provide women useful information as they exercise the right over their own body. No one openly advocates the elimination of certain populations, yet it happens nonetheless. It is already happening to those with Down’s Syndrome. With the article above, I find that it is probably happening to those with cystic fibrosis, too.

This article resonates with me for a different reason than my diagnosis. The high school American History class I teach is currently studying World War II and the rise of fascism in Germany: another instance where the value of entire populations was determined, the problem to society was identified, and the solution enacted. Such a comparison may seem far-fetched in a time free of Nazis, brown shirts, and kristallnachts. But as Ellie Weisel warned, tanks and guns and anger and hatred are secondary evils. Brown shirts and blitzkriegs and concentration camps are all visible and prompt fierce resistance. True evil resides and festers and matures to terrifying power under the shadow of indifference. And indifference is the sickness that infects our culture today and breeds the sentiment of that callous neighbor.

With prenatal testing, nearly ninety percent fewer souls are brought into the world with Down’s syndrome today, but none of them were cured. They were purged from society, and society remained silent and indifferent. Indifference is bred because the evil is unseen. There are no coffins or mass graves for those who are deemed not worthy of the monetary or emotional expense. There are only trashcans and medical waste facilities. They are forgotten and disposed. Any sensitivity to their humanity is brushed away by the simple line, a woman’s right to choose, someone else’s decision, an agent of indifference. Under this guise, evil grows.

Evil like this does not start spontaneously. It starts with an idea that sprouts and develops in the minds of men. In Weimar Germany, an idea of Jews as an annoyance came first. That was anti-Semitism. Then, Jews became a problem to be fixed. That was discrimination and oppression. Then, they were an enemy of the state to be eliminated. That was the holocaust. Presently, unwanted pregnancies of all stripes are considered annoyances. Taking root is the belief that these annoyances are problems to be fixed. With the health of the country becoming more and more a responsibility and an expenditure of government, how many intermediate steps are necessary for expensive populations (e.g. those with cystic fibrosis or Down’s syndrome) to become enemies of the state? I for one will not place my bets on stopping a slippery slope.

So, how should a person respond when they find the pros and cons of their very existence being debated? By fighting like your life depends on it. While the debate itself is demeaning, at least it remains a debate. In this debate, this fight, ideas in the mind of humanity form the battlefield. I will fight the evil idea of human beings holding relative worth based on their contribution to society, and stand on the inherent and unalienable worth and dignity of being human. Ideas matter, have serious consequences, and warrant a fight for their defense and advance. I will fight to bring this evil to the light, kill the indifference that silence brings, and treat evil ideas as seriously as they warrant. I have chosen my side in this battle. I suggest you choose yours.

-Caleb Jones