Ethics, Suffering, and Down Syndrome

Pre-Seminary Summer ReadingsStanley Hauerwas is one of my favorite Christian ethicists.  I don’t always agree with his theological positions or his ethical conclusions, but I am always challenged, informed, and helped by his essays on ethics.  This morning I read “Should Suffering Be Eliminated?” found in chapter 8 of The Hauerwas Reader.   This essay was the response to a 1984 video that informed the public how to prevent retardation in children.  Hauerwas noted that the film meant well, but essentially made the issue worse than it should be:

“Too often medicine becomes the means by which, in the name of humanity, we eliminate those who suffer.  Thus it has become common in our society to assume that certain children born with severe birth defects who also happen to be retarded should not be kept alive in order to spare them a lifetime of suffering.”  “If justice comes to mean the elimination of the victim of injustice rather than the cause of injustice, we stand the risk of creating admittedly a less troubled but deeply unjust world.”

[As a side, like many others today, I don’t like the term “retarded,” and Hauerwas even notes the term is not a good one; yet he stuck with it because it was the common one in 1984.  Please don’t take offense at the term in this blog post; I don’t mean to be derogatory in any way at all.]

In this essay Hauerwas challenges the notion that all suffering should be alleviated; he also challenges the idea that having Down Syndrome equals suffering.  It may sound rough, but Hauerwas makes some careful and pastoral points:

“Perhaps what we assume is not that the retarded suffer from being retarded but rather, because they are retarded, they will suffer from being in a world like ours [including discrimination, lack of care, love, etc.]. …All this is certainly true, but it is not an argument for preventing retardation in the name of preventing suffering; rather, it is an argument for changing the nature of the world in the interest of preventing the needless suffering we impose on the retarded.”

“I am not suggesting that the care we give to severely disabled children (or adults) will always result in happy results for themselves or those around them.  But to refrain from such care to spare them future suffering can be a formula for profound self-deception.  Too often the suffering we wish to spare them is the result of our unwillingness to change our lives so that those disabled might have a better life.  Or, even more troubling, we refrain from life-giving care simply because we do not like to have those who are different from us to care for.”   “Ironically…the policy of preventing suffering is one based on a failure of imagination.  Unable to see like the retarded, hear like them, we attribute to them our suffering.  We thus rob them of the opportunity to do what each of us must do: learn to bear and live with our individual sufferings.”

I highly recommend this whole essay; my brief quotations here are just a snapshot of an excellent longer discussion.  Basically, Hauwerwas challenged all my own assumptions about myself and those with disabilities, and I ended up realizing that I certainly need to change my selfish thinking and acting in many ways.  I’ll end with these great lines.

“…The issue is not whether retarded children can serve a human good, but whether we should be the kind of people, the kind of parents and community, that can receive, even welcome, them into our midst in a manner that allows them to flourish.”

“Too often we seek to do something rather than first simply learn how to be with, to be present to, the sufferer in his or her loneliness. …Our attempt to ‘do for’ the retarded must first be governed by our ability to ‘be with’ them…we learn that they are not incapable of fellow feeling with us and, just as important, that we are not incapable of fellow feeling with them.”

This essay is found on page 556 of The Hauerwas Reader.

shane lems

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