Distorted views of the human person

After writing about how the events of the first Christmas influence how we think about personhood I read something that made me realize how distorted some of the views of personhood are in our society. I was reading an essay by James Toomey in the Hastings Center Bioethics Forum titled “Is Noninvasive Prenatal Genetic Testing Eugenic?” Toomey was responding to an earlier article by Vardit Ravitsky in which Ravitsky draws on a disability rights argument to say that the promotion of widespread prenatal testing and abortion as a means of reducing the societal burden of genetic disease is morally problematic and a form of eugenics in its negative sense. Toomey says that Ravitsky’s concern is not valid.

Setting aside the moral concerns about abortion done for any reason, the thing that struck me was one of Toomey’s arguments. He says that reducing the number of people with genetic disorders by prenatal testing and abortion “is closer to a cure than an assault on personhood.” He says that “narrative or social identity is what we care about when we think about personhood.” Therefore, if a couple plans to have a child, conceives, discovers the child will have Down syndrome, aborts the child, and then conceives again and gives birth to a child without Down syndrome, he says this can be seen as involving a single person who has been cured of Down syndrome. He claims this removes the eugenic associations from prenatal testing to reduce the number of people in society with a disorder such as Down syndrome.

Saying that the two children in this scenario, one aborted and one brought to birth, can be considered one child even though they are genetically distinct and conceived at different times is a serious problem with this view of personhood. We live in a time in which people believe at once the contradictory ideas that the only things that are real and knowable are those things that are material and empirically verifiable and that human persons are completely nonmaterial entities defined by narrative and social identity. The latter leads to this bizarre idea that these two distinct children, one dead and one living, are one person. The first leads to other problems.

It turns out that this is another place in which our understanding of Jesus can help us understand who we are as human beings. The early church had to deal with heresies that said that Jesus was either physically real but not divine or divine but not a physical being. The early creeds addressed these ideas by asserting the biblical truth that Jesus was both a physical and spiritual being who was at the same time fully human and fully divine. In a similar way human beings are composed of intimately connected material and immaterial aspects of who we are. Denying either of those aspects of our being leads to great misunderstanding of who we are. Not understanding who we are leads to poor ethical judgments.

Racial inequalities in cancer survival

Three studies published in a supplemental issue of the journal Cancer this month come to disturbing conclusions: in the United States, the survival rates for colon, breast, and ovarian cancer are lower for black people than for white people.

The news isn’t all bad: overall cancer survival rates are going up. The three studies mentioned here draw from two larger studies of worldwide cancer survival, the CONCORD study, published in 2008, and the CONCORD-2 study, published in 2015. Between CONCORD and CONCORD-2, cancer survival increased across all groups. But in both studies, the survival of black people in the United States lagged behind that for white people by about 10%.

Now there are certainly many reasons for the difference. Black people may be getting diagnosed with cancer at later stages, when survival is lower. There may be differences between the two groups, like genetic factors or the presence of other illnesses, that cause the cancers to be more aggressive in blacks. Mistrust of the health care system is more common among black patients, so they may be less likely to access care or access it early enough.

But other reasons include socio-economic status and access to health care; those who can’t access medical care because they can’t afford it or because it is not available nearby are less likely to receive necessary screening and treatment. And most troubling is the “consistent finding that black women do not receive guidelines-based treatment compared with white women, even when treated within the same hospital.”

The situation is too complex for simplistic answers; one can’t say from these studies that doctors are individually practicing blatant racism, and there is after all such a thing as systemic racism. But the medical profession should take such findings seriously, and seek every available avenue of education and self-monitoring to ensure that of all the places people encounter racism, the health care system is not one of them. And Christians especially, who believe that God created all people with equal dignity because all of us are created in His image, should work towards a health care system where the value — or length — of one’s life does not vary based solely on the color of one’s skin.

Gender-Optional Birth Certifcates: A Parental Lesson

I’ve been parenting for over fourteen years now, and I’d think it should offer some seasoning and an accumulation of wisdom. Yet the parental “goalposts” are continually being moved as my own children grow into young adults, and (to throw in another metaphor) I enter uncharted waters every day. Current parenting choices are often met with rejoinders by myself and others, and regrets mount over past choices. Cheerfully, based on reports from those who preceded me, I find that it’s entirely expected. Parenting means making mistakes. And as my older children enter high school, I catch myself living vicariously through their triumphs, joys, and agonies. The tension is great to give them space to be their own people, not enlightened versions of me that will triumph over that which I never could. But it’s a struggle.

At the same time, and I don’t know if it’s advancing age or a sign of our times, I think I appreciate the satirical more now than ever. It seems that, if we can laugh about ourselves, we may be able to put our differences in perspective and not take ourselves quite so seriously. Sometimes “hard news” even reads like satire. It has been a few months now, but I thought that a friend who linked me to an article in the Canadian Broadcasting Company’s story was sharing a satirical piece. He was not.

My high school English teacher would read the pronouns and capitalization choices in that piece as an aneurism-inducing affront to all she held dear. I’m not sure I’ll be able to comment without upsetting her, me, and many others, in grammatical terms alone. In short, a transgender Canadian, Kori Doty, fought to keep the gender identification on their (grammatical groan) child, Searyl Atli, unspecified, stipulating that the child would not…and should not be expected to…have fully formed a gender identity until later in life. Gender identity is fluid, and a birth certificate should recognize that. According to Kori’s attorney, “assigning gender at birth is a violation of a child’s human rights to freely express their gender identity.” Cis-entitlement is not a satirical construct, but a point of great contention and injustice, and the violation of a basic human right, to those included in this piece.

A few months of pondering later, as a parent I can, in some ways, relate to Kori, who is making a choice with which I disagree, with some sympathy. Kori wants baby Searyl to be empowered to overcome the pain that gender identity struggles have already been lived in their life. Yes, there is also a clear political agenda, in the creation of a human right that society has never recognized, and I have far less respect for that. But I know the evangelical church has a history of poor responses to issues of sexual identity, on a political and relational level. I have limited personal experience with transgender individuals, and recognize that ethical decisions are not best made anecdotally, but even that limited experience has revealed that they have complex and challenging, and often extraordinarily painful, life stories. None have seemed capricious in their decisions. Some have been born with undetermined genitalia that truly weren’t clearly determinative of their gender. Others struggled with the very essence of who they were, even as anatomy would have seemed determinative.

The complexity of this issue should be sobering to us all, and particularly to those who embrace the Christian message that fully recognizes the devastation of a fallen world and the remarkable promise of grace that is not yet fully realized. I encourage the church to look at a complex issue with cautious, winsome eyes. The evangelical church lost its place at the table on the discussions of homosexuality (one where its voice could and should have been compelling) because too many showed graceless insensitivity. The high suicide rate of those who identify as transgender should be heartbreaking to the church. I am convicted as I initially read the article as unintentional satire.

Yet this is another issue where the complexity of medicine and social science is subordinated to a cultural agenda. There is, frankly, nothing wrong with asking for time and space to better study and understand the many pieces of the puzzle that transgenderism includes. The cry to “affirm” that which I can’t yet understand is unreasonable, even in the name of compassion. The appeal of bioethics is the way it synthesizes the disciplines of medicine, social science, theology, philosophy, and public policy, and recognizes the importance of each. I would like to think parents are the best arbiters of their children’s interests. Sadly, this story, and my own vicarious desires for my children, remind me otherwise. This parent has instrumentalized a child. The choice, if repeated on a mass scale, leads to social chaos and places a staggering stress on children whose developmental biology already faces challenges in our culture. Even now, we see gender reassignment surgery performed on young people. A sobering piece from a bit ago in The Federalist likens these surgeries with the frontal lobotomies of the 1930’s. Medicine needs to be exceedingly cautious as it encounters the “human right” that is gender identity. May bioethicists recognize the great complexity of transgenderism through eyes of compassion and grace, yet not submit medical and ethical wisdom to a cultural agenda. And may parents be wise enough to realize when we place the burdens of our agendas upon our children, whatever those agendas may be.

Hugh Heffner’s Legacy

Hugh Heffner died on Wednesday, September 27 in his Playboy mansion at the age of 91.  He was buried next to Marilyn Monroe, Playboy’s inaugural centerfold.

From the moment I heard that Heffner had died, I tried to process the significance of his life and death.  Part of me feels sadness and pity.  As a Christian, I can’t get one thought out of my mind.  What would it be like to stand before the Holy God and give an account of your life, when your claim of fame was bringing pornography into the mainstream?  Frankly, I’ve had to fight being too judgmental and too self-righteous.  After all, despite all my weaknesses, failures, and sins, Hugh Heffner makes me look good.  Yet, I too will one day give an account of my life before God.  Only by the grace of God, the blood of Jesus, and the cleansing of the Holy Spirit have my own filthy rags of unrighteousness been removed and replaced with the righteousness of Jesus.  Oddly, Heffner’s death has caused me to be more self-reflective and more determined to live righteously and to uphold high ethical standards.

Another part of me, however, is angry.  I’m angry because Heffner launched a magazine and an empire that pedals to our base, fallen, lustful desires and, in doing so, he bears the guilt of bringing thousands—even millions—of people into moral ruin.  For many men of my generation, Playboy was the introduction to pornography, a fascination that turned into a habit that turned into an addiction that resulted in personal ruin.  That fascination turned habit turned addiction is fueled even more powerfully today by easy access to internet porn that makes the original Playboy magazine look tame.  Indirectly at least, Heffner is responsible for aiding the destruction of the marriages, moral lives, and Christian walk of many friends and relatives of mine. Yes, I’m angry.  I pray my anger is “righteous anger.”  My heart breaks over the devastation that has been wrought by the sexual revolution of which Heffner’s legacy is a part.

Many authors of various news reports, articles, and blogs about Heffner’s life and death are not quite sure how to view his legacy.  For the most part, television news reports have been bland and blindly uncritical.  The obituaries for Hefner, even if they acknowledge the coarseness and unseemliness of his empire, have been full of praise for his great deeds as the conqueror of puritanism, as the advocate of progressive political issues, and as the successful businessman.

Feminists writers especially are at a wit’s end.  Take, for example, an article by feminist writer, Jill Filipovic (“No, Hugh Hefner Did Not Love Women”).  On the one hand, she commends Hefner for being “on the right side of many of the biggest issues of the modern era: free speech, reproductive choice, gay rights.” Personally, I don’t agree that Heffner and progressives are on the “right side” of these issues, but I concur that they are on the same side, as Filipovic notes.  While she upholds abortion rights as strongly as Heffner did, she does part company with him in one regard: “Hefner advocated for contraception and abortion rights, sure, but because those things benefited men’s sex lives, not because they were necessary components of female freedom.”

On the other hand, Filipovic condemns Hefner for reducing women to mere playmates, objects of men’s fantasies and unbridled desires.  I could not agree with her more on this point.  She observes, rightly in my opinion: “Hefner claimed to ‘love women.’ He certainly loved to look at women, or at least the type of women who fit a very particular model. He loved to make money by selling images of women to other men who ‘love women.’ He certainly met a lot of women, had sex with a lot of women, talked to a lot of women. But I’m not sure Hefner ever really knew any of us. And he certainly did not love us.”

Especially insightful is this point: “What Hefner and Playboy never did was present women as human, or consider us anything like men. Hefner made female sex objects more relatable and accessible — the Playboy centerfold was the girl next door, not the famous movie actress —but this wasn’t so much an elevation as a downward shift: social permission for men to look at all women through the zipper in their jeans, and not even bother to pretend it was otherwise.”

On this point, Filipovic is in agreement with conservative, Christian blogger Jon Bloom (“One Man’s Dream Destroyed Millions: The Pitiful Legacy of Hugh Hefner”): “Hefner and many others have become very rich by objectifying women and turning them into virtual prostitutes—mere bodily images to be used by millions of men who care nothing about them, who ravage them in their imaginations for selfish pleasure and then toss them in the trash. Hefner gave these women the fun name of “playmates,” a wicked mockery of both a person and play, adding a terrible insult to horrible injury.”

On at least this point, a progressive and a conservative writer can agree.  The objectification of women—the reduction of women to “mere body,” as if they were devoid of mind, emotion, and soul—is pornography’s ultimate evil.  I also agree.

 

Most pressing bioethics issue

In yesterday’s post Mark McQuain asked the readers of this blog what they consider to be the most pressing bioethics issue in the context of a call for our president to establish a bioethics council. He referred to my recent post on reproductive ethics and the manufacturing of children. I think that is important. I also think that abortion including the aborting of children with developmental abnormalities such as Down syndrome, euthanasia, and the treatment of children with gender dysphoria are very important. However, my most pressing concern related to bioethics in our society is freedom of conscience.

It is important that we express clearly the value of human life and how that impacts how we understand the ethics of things such as reproductive technology, abortion and euthanasia, but we are living in a time in which many do not listen to reasoned arguments about what is right. Much of our society believes that what is right is determined by how they feel and they desire to be free of any limits on what they can do. They also believe, somewhat contradictorily, that they should be affirmed in being able to do what they desire by having society help them do it; even if that means that others need to do things that they believe to be wrong. Our society is losing the concept of any objective moral values. Without objective moral values it does not make sense for someone to refuse another person’s request for help in fulfilling their desires based on conscience, particularly conscience informed by an objective understanding of right and wrong. If there is no objective standard on which to refuse such a request the refusal must involve some sort of personal rejection of the one making the request.

Thus we have ACOG saying their members must affirm patients who desire an abortion. Canadian physicians may soon be required to affirm their patients’ desire for euthanasia. There is a push for physicians, psychologists and others to be required to affirm the desire for a confused child to be identified as having a gender that is in conflict with the child’s biological sex. As Cheyn Onarecker has discussed in his posts yesterday and last week, there are some prominent ethicists who give reasoned, although faulty, arguments against rights of consciences for physicians.

The elimination of rights of conscience threatens the ability of not only Christian physicians but all people of strong moral conviction in all professions to practice their professions without violating their consciences. If allowed to go unchecked the demand to affirm every request by every person in the name of pluralism and personal liberty will leave every profession in our society without those who are most conscientious. It will also lead to the demise of ethics as a disciple. If our society really believes that there are no objective moral truths and everyone should be free to pursue his or her desires and enlist others in that pursuit, then any statement that an action is wrong will not be seen as a particular understanding of what is right and wrong which can be civilly discussed, but as an unfounded personal attack on someone who desires to do that action. Thus there will be reason to shut down all ethical discussion and the discipline of ethics will be forbidden.

Inner Sense and Gender Dysphoria

Steve Phillips posted on “Caring for people with gender dysphoria” almost one year ago. In his post, he referenced a talk at a previous CBHD Summer Conference by Prof. Robert George, where Dr. George posited that the concept that the belief that one’s gender is based one’s innate or inner sense rather than one’s biological/physical sex is rooted in the Gnostic idea that human beings consist of a personal mind that lives in a non-personal body and that this stands in contrast to the longstanding Christian understanding of unity of non-material soul/spirit and material body making up the whole person. I did not attend that talk but offer a recent paper by Dr. George which covers the same ground as backdrop to this post.

The reason for the discussion of Gnosticism related to an earlier point in that same blog referencing the opinion of Dr. Paul McHugh, retired psychiatrist at Johns Hopkins University, who has over the past few years published comments arguing that gender dysphoria is a result of disordered thinking, that is, a mental disorder, requiring treatment, not surgery to complete a gender transition. Dr. McHugh has made much of the fact that Johns Hopkins, despite being an early leader in gender transition surgery, decided very early on that gender transition surgery was not sufficiently efficacious and discontinued the practice.

What a difference a year can make. Johns Hopkins has recently decided to resume what they are calling gender-affirming surgery and specifically point out that when “individuals associated with Johns Hopkins exercise the right of expression, they do not speak on behalf of the institution.”

Johns Hopkins is not alone. A very recent Perspective in the New England Journal of Medicine called “The Future of Transgender Coverage” by Kellan Baker commented that there has been “a rapid increase in insurance coverage for health care services related to gender transition.” Baker offered three reasons to account for this increase: “a growing expert consensus on the medical necessity of gender transition, new legal interpretations prohibiting insurance discrimination against transgender people, and mounting evidence that transgender-inclusive coverage is cost-effective.”

For the sake of the remainder of this blog entry, I want to focus on the first claim: Is there a growing expert consensus on the medical necessity of gender transition?

Gender dysphoria is the term used in the Diagnostic and Statistical Manual of Mental Disorders to describe the clinically significant stress that can occur in a transgender person, one who experiences a discrepancy between one’s innate sense of gender identity and one’s birth sex. Baker says the current standard of care for treating gender dysphoria is gender transition, “which may include mental health counseling, hormone therapy, and reconstructive surgeries affecting primary and secondary sex characteristics.” The source provided for the standard of care claim is a 2012 article in the International Journal of Transgenderism (see here for abstract link – full article requires subscription). Baker supported the growing expert consensus claim by providing a list maintained by Lambda Legal of several major US medical associations consensus statements insisting on health insurance coverage in general for treatment of gender dysphoria, a smaller portion specifically stipulating that coverage include gender transition.

What data is being used to determine whether gender transition is medically necessary to treat gender dysphoria? Available research articles or meta-analyses of these research articles on the long-term outcomes of gender transition is actually less definitive. Most studies are too small to have statistical power, not surprising given the small number of transgender people. Another problem with most studies is lack of a control group. The ideal control group would be a group of transgender people who requested but did not receive gender transition. A third problem is the lack of bias-limiting randomization (though how could one ever ethically design a study where sex-reassignment was done randomly to some patients but not to others?) A summary of the recent research and meta-analysis may be found in a 2016 review article by Lawrence Mayer and Paul McHugh in “Sexuality and Gender” in The New Atlantis (see pages 108-113). Mayer and McHugh conclude their summary by stating they remain skeptical of the efficacy of gender transition in treating gender dysphoria, which has resulted in largely negative and some frankly ad hominem attacks. I was surprised by that response, as the summary includes the meta-analysis by Mayo Clinic researchers Murad et. al., which was arguably pro gender transition regarding self-reported measures reporting some improvement in gender dysphoria, and the large study by Dhejne and colleagues at the Karolinska Institute and Gothenburg University, though showing high suicide rates in sex-reassigned persons (though not suggesting the high suicide rate was caused by the gender transition surgery), went so far as to comment that “things might have been even worse without sex reassignment”. Their study specifically did not address the question of whether gender reassignment alters gender dysphoria.

After conducting my own non-scientific survey of readily available scholarly articles related to gender transition for adult gender dysphoria published since 2016, most of which consisted of small sample, non-randomized, mostly non-controlled studies, I am willing to concede that the majority do state that gender transition reduces gender dysphoria.

But if the gold standard for gender is an individual’s inner sense regardless of that individual’s biological sex (or any other physical/material trait), what objective measure may a researcher reliably use to determine the effect of physical gender transition on gender and gender dysphoria? Per Dr. George (emphasis his):

What is a pre-operative “male-to-female” transgender individual saying when he says he’s “really a woman” and desires surgery to confirm that fact? He’s not saying his sex is female; that’s obviously false. Nor is he saying that his gender is “woman” or “feminine,” even if we grant that gender is partly or wholly a matter of self-presentation and social presence. It is clearly false to say that this biological male is already perceived as a woman. He wants to be perceived this way. Yet the pre-operative claim that he is “really a woman” is the premise of his plea for surgery. So it has to be prior. What, then, does it refer to? The answer cannot be his inner sense. For that would still have to be an inner sense of something—but there seems to be no “something” for it to be the sense of.

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.

Fairness in our moral critiques

Recently a friend sent me a statement by a group of Christians in higher education which took a stand against prejudice and mistreatment toward women, racial minorities, and immigrants. I felt there was an implied request for me to endorse this statement. The statement grounded the concerns of this group on the understanding that all human beings are created in the image of God. I agree wholeheartedly that the concept of the imago Dei is an essential foundation of Christian ethics, and it is clearly wrong for any group including women, racial minorities, and immigrants to be mistreated and not given the respect due to anyone who is made in the image of God. However, I was concerned that this statement about the ills of American society was silent about other ways in which groups of human beings made in the image of God are mistreated. They made no mention of the millions of unborn fetuses who have been killed by abortion. They made no mention of the millions of children who are disadvantaged by being raised without the benefit of having to parents because of the irresponsible sexual behavior of their parents.

The concept that every human being has dignity because each person has been created in the image of God needs to impact everything that we do. Unfortunately those on one end of our politically polarized society find it easy to ignore the dignity of women, racial minorities, and immigrants. We do need to speak out against that. However, those on the other end of that spectrum commonly fail to respect the human dignity of unborn fetuses in their emphasis on personal liberty related to abortion. They also fail to respect the human dignity of children who are the victims of the sexual revolution and the breakdown of marriage and family that it has encouraged.

We need to be careful that we are not blind to our own prejudices and need to stand up for human dignity based on all of us being made in the image of God no matter who in the political spectrum is made uncomfortable by the stand that we take.

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/.