All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make. Now sadly, the real downfall of people with disabilities is that we parents still have not found this unit of measurement which would enable us to quantify all they bring to society. But how on earth do you quantify something so strong, so beautiful, and yet so invisible, so intangible, and therefore so worthless, so meaningless, and so easily dismissible to most people who can’t experience it? And how can you blame them? I long for the day when we can quantify this most powerful and almost magical je ne sais quoi, because you would finally understand that our children are not a burden; disabilities are not a burden; they are everything but. I’ll tell you what the burden is. It’s a growing lack of empathy and a thick-lined cloak of altruism: “We don’t want them to suffer.” But it’s not just a burden; it’s also a threat to people like my daughter. It’s time beings-in-the-making stop being discarded solely on the ground of their predicted disabilities. Because we are also doing away with a mountain of hidden abilities. . . you know what else is so sad? A society without disabilities, without diversity, without differences, will not be any happier than the one we’ve got now. It’s an illusion.

Also see here.

The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

On (Being) Better than Human, Part 3A

As I noted in Part 1 of this series (see my 03/25/13 post), in Better than Human Allen Buchanan considers four major lines of objection to the “enhancement enterprise.” As Buchanan summarizes them, each of these objections claims that biomedical enhancement is “different” in morally significant ways from other kinds of (nonbiomedical) enhancement. Specifically, these objections assert that:

(1) biomedical enhancements are different because they change our biology; (2) biomedical enhancements are different because (some of them) change the human gene pool; (3) biomedical enhancements are different because they could change or destroy human nature; [and] (4) biomedical enhancements are different because they amount to playing God (p. 12).

In Chapter 2, Buchanan takes on the second and third of these objections—that is, the “changing the human gene pool” and “changing human nature” objections, respectively.

The heart of Buchanan’s discussion in this chapter is a consideration of two competing analogies in terms of which one might understand evolutionary biology—or, alternatively, “nature” (p. 29)—and its processes: the “master engineer” and the “grim tinkerer” analogies, respectively. On the former analogy, “organisms are like engineering masterpieces: beautifully designed, harmonious, finished products that are stable and durable (if we leave them alone)” (p. 29). On the latter, evolution is “morally blind,” “fickle,” and “tightly shackled” (p. 49)—it produces “cobbled-together, unstable works in progress, and then discards them” (p. 28).

Evolution is disanalogous to a master engineer, Buchanan says, in two key respects. First, “natural selection never gets the job done” (p. 28). Environments are constantly changing, and organisms are constantly adapting both to their environments and to each other, in “a ceaseless round of adaptation and counteradaptation” (p. 28)—resulting in further changes both to organisms and their environment, in a process that never arrives at a terminus. So rather than being “the end points of a process whereby they climb a ladder to perfect adaptation to their environment,” organisms instead exist in a state of perpetual instability, one that belies the “finely balanced” nature implied by the master engineer analogy (pp. 28-29). Second,

unlike a master engineer, evolution doesn’t design what it produces according to a plan that it draws up in advance. Instead, it modifies organisms in response to short-term problems, with no thought of long-term effects. Evolution has no overall game plan for any species, and the results show it. What’s useful for solving today’s problems can cause new problems—and even extinction—down the line (p. 29).

In the final analysis, Buchanan contends, “evolution is more like a morally blind, fickle, tightly shackled tinkerer” than a master engineer. The burden of the rest of the chapter is to provide reasons why (on Buchanan’s view) we ought to accept this analogy over against the master engineer analogy.

In order to adjudicate between these two analogies, Buchanan says, we need to grasp certain key aspects of the mechanisms of evolution (p. 29). The first thing to notice in this regard is that nature is replete with instances of “suboptimal design” (pp. 30-31), which Buchanan takes to be prima facie evidence that the master engineer analogy is problematic at best. Examples of such “design flaws” include, inter alia, the fact that in male mammals the urinary tract “passes through (rather than being routed around) the prostate gland, which can swell and block urinary function,” and the “hasty shift from quadruped to biped, which resulted in back and knee problems and a birth canal that passes through the pelvis, resulting in greatly increased risks to both mother and child in the birthing process” (p. 30). Numerous additional examples could be cited (and Buchanan cites several other illustrative examples here).[1] “Design flaws” such as these led Darwin to develop his theory of natural selection, with which, Buchanan informs us, “Darwin debunked the argument from intelligent design, one of the traditional arguments for the existence of God, by cataloguing the ‘clumsy, blundering, wasteful’ works of nature” (p. 30).

To show more clearly why nature is not best thought of as a “master engineer,” Buchanan introduces at this point a distinction between what he terms “Unintentional Genetic Modification” (UGM) and “Intentional Genetic Modification” (IGM). UGM is “evolution as usual, what Darwin called ‘descent with modification,’ where a driving force of the modification is natural selection”—in other words, “evolution without intentional modification of human genes by human beings” (p. 31). IGM, then, in the context relevant to our discussion, is intentional modification of human genes by human beings.

Buchanan’s aim here is actually two-fold: first, he wants to provide reasons why we ought to reject the “master engineer” analogy in favor of the “grim tinkerer” analogy, and second, he wants to give us reasons for considering the possibility that it may be preferable, in at least some circumstances, to actively pursue IGM rather than simply leaving the development of the human species entirely to UGM. His subsequent discussion in the remainder of this chapter is designed to accomplish both of these aims simultaneously. To that end, he begins by enumerating some of the built-in limitations of UGM, and then goes on to describe some ways in which IGM might be employed to overcome those limitations.

In the next post in this series, we’ll finish up our explication of Buchanan’s argument, and then develop some critical observations regarding that argument. By way of preview, three major limitations of UGM to which Buchanan draws our attention are the facts that (1) UGM is “insensitive” to post-reproductive quality of life (pp. 32-37); (2) in UGM, beneficial mutations spread only by way of a “nasty, brutish, and long” process (37-45); and (3) UGM selects only for “reproductive fitness, not human good” (pp. 45-48). Critical remarks will focus, in turn, on several epistemological, ontological, and moral issues raised by the way Buchanan frames and develops his argument in this chapter.

 


[1] A bonus for the philosophy buffs out there: In the context of this discussion of “design flaws,” Buchanan offers an arresting image in answer to Nagel’s famous query regarding what it’s like to be a bat. As Buchanan explains, “bats spend a good deal of their time hanging upside down, closely packed together, with their feces pouring down over their bodies to their heads. (Imagine yourself holding a toothpaste tube upright and squeezing it until the contents cover your hands. That’s what it’s like to be a bat.)” (p. 31).

Journeys of Transformation

In my last post, “A Preview of Coming Attractions” (02-11-13), I signaled the start of a multi-part series of review essays covering three recently published books addressing ethical issues surrounding enhancement technologies and practices. I had intended to launch that series with today’s post. Before starting that series, however, I want to go on a brief discursus, one that will, I believe, turn out to be relevant to the themes to be touched on in the forthcoming series.

Last week, I attended the annual “Christ and Culture” lecture at California Baptist University in Riverside, California. This year’s speaker was Ralph Winter, producer of the first three X-Men films and numerous other successful film projects. Using such recent films as Les Miserables, Toy Story, Avatar, and others as illustrative examples, Winter set out, in the broadest sense, to show “how the gospel is often displayed in… contemporary film.” The unifying theme in all these stories is what Winter referred to as a “journey of transformation.” In each of these stories, the main character/hero grows through experiencing some form of adversity, learns something important about him or herself, and is transformed positively in some way.

One of Winter’s central concerns in his lecture was to explore the general question of how Christians engage with the broader culture, and particularly with how they communicate their messages to that culture. Here, Winter contends that “Christian stories often fail because we’re afraid of the journey,” by which he means that “our stories often hide from pain”—they avoid addressing the painful, the difficult, the ugly, the uncomfortable aspects of life—and place an emphasis on propositional assent over against an embrace of the “transformational journey” that is the life of faith. That is to say, there is a tendency to focus on the destination (heaven) to the exclusion of the journey that we take along the way.

What does all of this have to do with bioethics? There are at least two central lessons to be learned here.

First, in the context of genetic enhancement technologies and practices, it is worth asking the question: to what extent is the “enhancement enterprise” (broadly speaking, the attempt to “improve” human capacities by way of genetic or other interventions and/or technologies, as well as the cultural push toward embracing that agenda) in fact driven by a deep-seated, underlying “fear of the journey”—that is, a fear of those aspects of the aging process that are ugly, uncomfortable, painful, and so forth? Put more simply, to what extent is the drive toward “enhancement” really a flight from the inevitable realities of our lives as embodied creatures? (I do not propose to answer this question here; I pose it, however, as an important background issue to be kept in mind when considering specific arguments regarding the enhancement enterprise.)

Second, and more generally, our bioethical reflections—whether on beginning of life issues, end of life issues, or whatever—must always be attentive to the lived reality of embodied human existence. In particular, we must be willing to face the sometimes harsh realities of pain, suffering, indignity, and so forth, that can accompany the experience of various medical and other conditions. This is especially pertinent at the end of life, where the dying process can (but does not necessarily) involve significant levels of pain, discomfort, and distress. In a word, our bioethical reflections must tell “stories” that are true to the lived realities of human existence. If we are not willing to face these sometimes difficult realities, our pronouncements on bioethical issues are likely to seem shallow, insensitive, or even irrelevant.

This is not to say, of course, that our arguments and other reflections on bioethical issues should be overly-negative or fatalistic. Indeed, a focus on truth mandates that we tell “the truth, the whole truth, and nothing but.” This means being attentive to the fact (for example) that while the aging and dying processes can be characterized by pain, discomfort, and suffering, they are not always so characterized (indeed, with the skillful use of pain management techniques, they rarely need to be—but that is a different post altogether). The aging and dying processes can also be characterized by peace, joy, personal growth and development, and a sense of fulfillment. In a phrase: these processes can themselves be “journeys of transformation.” From the perspective of Christian theology, of course, the entire human lifespan can be understood in this way as well. The key point for present purposes is simply this: our bioethical reflections and arguments must attend to the potentially transformational aspects of the experience of pain, suffering, and the like, in addition to other considerations having to do with rights, obligations, principles, and so on.

Human life, in other words, is as much about the journey as it is about the destination. And that fact can make all the difference when it comes to bioethics.

Eugenics and the genetic testing of embryos and fetuses

In a recent article in the Australian media Julian Savulescu, a noted Oxford ethicist who is a visiting professor at Monash University in Melbourne, makes the contention that selecting which babies are born by doing genetic testing on embryos or fetuses and only allowing those that are desired to live to birth in the way that it is allowed in Australia shares the moral problems of past eugenics programs that we have rejected. His point is that the current practice in Australia allows selection of embryos by preimplantation genetic diagnosis and fetal testing with selective abortion only for diseases and not for sex selection or other non-disease characteristics. By allowing selection based only on diseases the society is saying that “lives with disability are less deserving of respect, or have lower moral status.” That is why we rejected the eugenics programs of the past.

Savulescu points out that “If either the embryo or the fetus has a moral status – then it would be wrong to kill either, whether or not a disability is present. If the embryo or fetus does not have a moral status, it should be permissible to destroy an embryo or abort a fetus for any reason. In this way, paradoxically, allowing testing for diseases, but not for other genes, is eugenic in objectionable ways.”

It would be easy to go from there to saying that genetic testing of embryos and fetuses for the purpose of selecting who will be allowed to be born should not be done based on the principle of the value of all human lives underlies our rejection of eugenics, but he does not go that direction. Instead he moves toward the permissibility of all embryonic and fetal testing by saying that lifting the restrictions on personal liberty imposed by limiting genetic testing of embryos and fetuses to testing for disease would resolve the moral objection that the current policy involves morally impermissible eugenics. He gets there by saying that since most people already accept the testing of embryos and fetuses for diseases, we should not say that all such selective testing is wrong based on the moral status of embryos and fetuses and the way to validate people’s acceptance of testing for diseases is to allow testing for non-disease characteristics.

Savulescu’s means of getting to his conclusion is an interesting and commonly used one to justify things that have previously been understood to be wrong. Rather than giving arguments for why we should believe that a human embryo or fetus does or does not have full moral status, he says we have already accepted a limited practice that would otherwise have been considered immoral, so we should accept a broader version of the same sort of practice. This is the process by which immoral behavior takes over a society, and also the process by which an individual falls into immorality. First justify a very limited violation of morality, and then once that is accepted use that to justify further immorality.
That is why we need to stand firm on basic moral values such as the dignity and value of every human life. Defending the moral status of the weakest and most defenseless human beings is essential to avoid the acceptance of things like aborting fetuses because they are female that currently seem obviously wrong, but may become accepted by a gradual breakdown of moral values.

Down Syndrome and Thanksgiving

 

Despite today being the retail abomination known as “Black Friday,” I will continue in the vein of Thanksgiving and write about a person I am thankful for.

My nephew’s name is Jacob, and he has Down Syndrome. He just turned 18. He is one of the most loyal and loving people I have the privilege of knowing. He gives incredible, bone-crushing hugs. His cell phone voice mail message ends with, “Love you.” His aunt, my sister, lies in a nursing home, barely able to interact since a brain injury in June; but Jacob doesn’t care about her medical conditions, he just loves to be there with her, because he loves his aunt. I am thankful for Jacob’s example of unconditional love.

When we take Jacob out to eat, he orders french fries. And when he eats french fries, he eats them a certain way, one at a time, dipped just so in his favorite condiment: steak sauce. Lunch takes at least an hour. I am thankful that Jacob makes us slow down. 

Jacob loves music. He owns several guitars, and received a bass guitar for his last birthday. He especially loves worship music. He can strum his guitars, although a guitarist probably wouldn’t call it “playing” guitar. His singing isn’t exactly on key. Yet most Sundays he is in front of his church leading worship with the worship team. His microphone may not be turned up terribly high, but his love for Christ is at full volume. I am thankful for Jacob’s example of unselfconscious worship.

Jacob sometimes requires extra patience. His parents have made extra sacrifices. There are things he does that will drive you crazy if you let them (Is there anybody for whom that is not true?). He will never live independently, and will always require a level of extra care. But the extra care and patience are richly rewarded. And while we think we are making extra sacrifices for Jacob, I sometimes think that God sees it differently: that He is giving us an extra measure of blessing by allowing us to be with Jacob. Yet it seems that too many, when they think of “Down Syndrome,” think only of the extra work and sacrifice and limitations. Either that, or they think of a life that is not worth living. Whatever the thinking, it is both sad and frightening that in this country, about 92% of the unborn babies suspected (on the basis of prenatal testing) of having Down Syndrome are aborted: sad, because of the loss of human life through abortion as well as the loss of the privilege of being with these unique people; and frightening, because of what it says about us as a society. I am thankful that Jacob was not one of the 92%.

Kaddish “I Am Here”

This past fall, I had the privilege of attending the Houston Symphony’s production of

A prisoner in a special chamber responds to changing air pressure during high-altitude experiments. 1942. Dachau, Germany

Kaddish.  The Kaddish Project seeks to commemorate the noble struggle of individual Holocaust survivors, including four who have made their homes in Houston.  Much of my research at Trinity focused on the concept of personhood, that we are more than just biological systems but instead are “someones,” persons.  I couldn’t help but think of this as I heard the chorus sing the song of the persecuted Jews: I am someone and “I am here.”  Though mocked and beaten in the streets even in the days before World War II, the Jewish people of Europe taught their children that they were of value even though others thought otherwise.  The soloists and chorus related the story of one survivor’s recollection of a concentration camp.  When the prisoners arrived, those under 14 years of age and over 65 were separated to the left and killed.  They were less than optimal for the German labor camp, so they were eliminated.  Kaddish led me to reflect on how physicians were a significant part of the German “Final Solution.”  They were the ones who deemed the crippled and deformed, the mentally deranged and deficient economic burdens.  That’s why I think that as we look for disease and perform technical procedures, it’s important for us to remember that our patients are someones who we must relate to and care for.

Sterilization Decision Illustrates the Importance of Intent

In a recent British court case the mother of a 21-year-old woman who was pregnant with her second child asked that doctors perform a sterilization procedure at the time of her planned C-section.  The woman has a mental disability and the court is being asked to determine if she is capable of making her own decision regarding sterilization. If it is determined that she is not, her mother is asking for permission for her doctors to sterilize her.  The mother says that this would be in her daughter’s best interest due to her inability to care for further children and the likelihood that she would be separated from those children.

This request raises the concern that sterilization of those who had a mental disability was what the eugenics movement of the early 20th century proposed.  That attempt to rid society of those who were not desired by preventing their birth showed disrespect for the intrinsic human worth of those with a disability.  However, there is a big difference between sterilizing someone in order to decrease the burden on society and doing so because it is in the best interest of the person with the disability.  The mother says she  desires her daughter to be sterilized for the daughter’s benefit.

The moral difference between the eugenics movement and this mother’s request is one of intent.  To sterilize a person who lacks capability to make her own decisions with the sole intent of limiting the number of potentially mentally disabled offspring in society is wrong.  To sterilize a person who lacks capability to make her own decisions with the intent of doing what is in her best interest may be right thing to do.  If the mother’s intent is not actually her daughter’s best interest, but her own, then it may not be right.

Even though the acts may be the same and the consequences may be the same, intent is the deciding factor in this moral decision.