Accepting Our Children, Accepting Ourselves 

The New York Times recently ran a three-part series “On the Embryo Question.” Part II was titled, “Should Human Life be Optimized?” The online version features photos and clips of babies and toddlers who were conceived on the basis of genetic selection. In one, a playful girl appears to be crawling through the screen toward the reader. An arrow points to her with the caption, “Her mother screened for gender and health during I.V.F.”  

Far from optimizing human life, these practices actually render it more and more precarious for all of us.  

“Anything But Sorry” 

In 2017, the Canadian Down Syndrome Society released a series of short films as part of its “Anything But Sorry” campaign. In the most-highly viewed video, young adults with Down Syndrome propose a range of humorous congratulatory messages interspersed with mild profanity in order to make the case that the only truly “bad word” with which to welcome a baby into the world is “sorry.” And, in another video in this series, several parents of children with Down Syndrome recall the times they were told “sorry” by well-meaning doctors and loved ones. The parents discuss the impact this had on them and their families.  

We can ask ourselves: if those with Down Syndrome and their families insist that every child deserves a warm welcome, then why have so many been met with expressions of regret?  

How Will This Be? 

For most of us, our first experience of responsibility was of being our parents’ responsibility. We tend to think that responsibility begins when a person is rational and can be held accountable for his actions, when an act is freely chosen and concerns some morally relevant matter. But of course, there was for each of us a much earlier experience that involved being the object of our parents’ responsibility to take care of us. We can learn a lot about the nature of responsibility from the parent-child relationship. But first, we have to ask: why are parents responsible after all? 

The bioethicist Hans Jonas explained, “In its most original and massive sense, responsibility follows from being the cause of existence.” Moral responsibility derives from someone’s, through his or her own action, being the cause of some morally significant result. From parental responsibility, we have all other kinds of responsibility that are analogous insofar as every person is a parent of his or her actions. In fact, the very meaning of the word “parent” comes from parere which means “to bring forth, give birth to, produce.” Every action brings something new into the world; every choice is like a birth, and every action the cause of something new. This matters because birth, like every human action, brings with it something both expected and unexpected. 

When a woman discovers she is pregnant, she almost always knows how it happened but she cannot know exactly how it will go. As Jonas’s friend, political theorist Hannah Arendt, writes, “It is in the nature of beginning that something new is started which cannot be expected from whatever may have happened before. This character of startling unexpectedness is inherent in all beginnings and in all origins.” Children are always surprising, and often, above all, to their parents. Each child’s uniqueness is literally and figuratively brought home to the awestruck parents. Yet the undeniable surprise that comes with each new child does not usually prevent parents from wanting to know something about what to expect which is perhaps why one of the bestselling pregnancy books of all time bears the title What to Expect When You’re Expecting. It might give little reassurance to new parents to find a book instead titled What Cannot Be Known Because It Is Totally Unexpected. But any parent will admit countless surprises along the way about how things turn out.  

To act is always a risk. As Arendt explains,  

The reason why we are never able to foretell with certainty the outcome and end of any action is simply that action has no end. The process of a single deed can quite literally endure throughout time until mankind itself has come to an end. 

In this sense, there is no acting without consequences. The actions we choose have some influence on what the consequences may be, but they can never prevent there being any consequences altogether. This is because our actions always take place within relationships, within a broader community of persons.   

In Anthony Doerr’s 2014 novel All the Light We Cannot See, he gives this moving description of a father’s humble awe at his responsibility for his teenage daughter Marie-Laure, who became blind at age six: 

There is a humility of being a father to someone so powerful, as if he were only a narrow conduit for another, greater thing. That’s how it feels right now, he thinks, kneeling beside her, rinsing her hair: as though his love for his daughter will outstrip the limits of his body. The walls could fall away, even the whole city, and the brightness of that feeling would not wane. 

The fact that the consequences of human actions and new life reverberate in ways we could neither plan for nor expect could be debilitating. Daniel LeBlanc could not have known that he would be constructing a model, a miniature of the entire city so that his sightless daughter could learn to navigate it amid the Nazi occupation of France. Such is the risk of life. And the risk of a love that could “outstrip the limits of his body” is what made it worth it.  

Literature is helpful because it illustrates to us the truth that every character and person comes to be known through their actions, that at once constitute and reveal the kind of person they are. How we live out our responsibility is the basis for character development and meaning, in both a literary and a moral sense. 

In some ways, we live in a time that acknowledges greater responsibility of parents than ever before. A combination of scientific knowledge, technological developments, and material prosperity leads us to have a sense of mastery over life’s circumstances. Today, having children is often seen as a life choice, one decision among others that can be desired, intended, and planned. So entrenched and widespread is this view that even those who do not avail themselves of any artificial interventions concerning fertility are often seen as having every outcome result from their sheer willfulness or desire. The reality, of course, is quite different. More often than not, new life has the character of the unexpected, of great surprise mixed with longings, disappointments, anxieties, and hopes. 

Having a child is overwhelming enough, but what about under highly unexpected circumstances or with the onslaught of specific knowledge about potential risks and challenges? Prenatal testing has been among the factors that seem to paradoxically give parents increased knowledge about unknowns. Genetic information has given parents the impression that they can know and control for what to expect about their child when, in fact, the birth of any child will undeniably lead to surprises that cannot be expected because of the uniqueness of this new person who has never before existed. 

All of this is complex because there is a sense in which the child is loved unconditionally and there is also the fact that a child can only be loved in the particular conditions in which we find ourselves— –in the reality of this unique person’s actual existence, and not in some ideal or abstraction that does not exist. The uncertainty of action is a part of the human condition we cannot eliminate. Attempting to eliminate the human condition only serves to rupture the particular conditions we have been given in which to live and to love.  

“I Never Wish I Wasn’t Born.” 

In an article on “The Art of Disability Parenting,” an interviewer asked six mothers around the world what it is like raising children with disabilities. In these short vignettes, the mothers say things like, “It’s impossible for outsiders to imagine the daily effort it takes to care for a child with profound disabilities” and “Ever since Patrick was born and we found out that he would have lifelong challenges due to a chromosomal condition, I go through times where I feel a sort of tension, a space between guilt and grief that explains the hurt but doesn’t put shame anywhere near an innocent child.” 

Most parents do not anticipate having a child with a disability. Since parents naturally want the best for their children, it can be distressing to learn that a child is especially susceptible to suffering. This is particularly prominent in prosperous societies where we have the sense that so much is within our control. 

With the rise of genetic testing and screening, many parents report feelings of guilt over passing on genetic conditions to their children. “Genetic guilt” might be the term. This guilt is heightened when a genetic risk factor is ascertained through prenatal testing. There are online support groups for every community and the discussions that happen there deserve our attention and reflection.  

For example, the BRCA genetic mutations dramatically increase the likelihood of developing breast and ovarian cancer. The more we learn about the hereditary nature of this condition, the more people express feelings of guilt for handing on the genetic predisposition to their children amid the increased availability of genetic testing and screening. 

Consider some of the posts in a BRCA Facebook group about contending with such genetic knowledge: 

Does anyone else feel guilt? I think about my kids testing positive for BRCA1 and 2 and then my grandchildren and I literally cry my eyes out. I know I didn’t necessarily give it to them but I can’t get the thought out of my head. 

I haven’t quite handled the guilt of knowing my 3 kids now have to be tested. 

I know it isn’t something I can control but I feel so much guilt. 

The only thing I got from my genetic counselor was guilt for choosing to have kids.

My fertility doctor really pushed me to go the IVF route to avoid passing the BRCA mutation to my baby. 

I truly feel like crap as a mom for giving her the gene[tic mutation]. 

I definitely don’t want to pass on this gene[tic mutation] to my children but I also don’t know if I want to do IVF. Am I [wrong to] want to have kids the natural way? 

What are we to make of this? And how can we best accompany those who experience these feelings? Many commenters beneath these posts affirm the feelings while simultaneously trying to reassure these parents they are not in fact guilty. But can we explain why they are not? 

I am particularly struck by the variations on the theme of what one woman who is a BRCA mutation carrier expressed in her comment beneath a post on genetic guilt. She wrote, “I never wish I wasn’t born.” This testimony is instructive because we know it is a consistent trend that people rate other people’s quality of life lower than the people do themselves. Many estimate, “I could never live with this or that condition.” 

Granted, disability and genetic risk, like the risk posed by the BRCA gene, are not entirely alike. But feelings of guilt and regret can exist in both circumstances.  

Catherine Frazee, a leading disability scholar in Canada, calls herself a “fugitive from the laws of genetic science” because she was born just after the invention of amniocentesis. In her fascinating book, Dispatches from Disabled Country, she insists, “Bad things happen to disabled people. Disability isn’t one of them.” She continues:  

In every barrier that we encounter, disabled people are reminded that we are unexpected. In every stare that follows us, in every moment of awkward silence that surrounds us, disabled people are reminded that we are the other. In every gush of admiration, disabled people are reminded that we are what nondisabled people feel lucky not to be. 

Returning to the themes of responsibility and guilt, Hannah Arendt makes a crucial and convincing distinction between the two. She says, “There is such a thing as responsibility for things one has not done; one can be held liable for them. But there is no such thing as being guilty or feeling guilty for things that happened without oneself actively participating in them.” By the procreative act, parents are responsible for being the cause of their child’s existence whenever fertilization takes place. Given the nature and purpose of the sexual act, it always has a morally significant dimension. Yet, despite the fact that children receive their genetic makeup from their parents and equally owing to the nature of the reproductive act, parents cannot be said to actively participate in any morally relevant sense in their child’s genetics. The introduction of IVF and preimplantation genetic diagnosis (PGD) has, understandably, obfuscated this distinction. By speculatively selecting certain embryos over others, parents and doctors now seem to be “actively participating” in determining the genetic future of any eventual children. And such selections have implications beyond the families who choose to attempt them. As Leon Kass put it, “A child with Down’s syndrome or hemophilia or muscular dystrophy born at a time when most of his (potential) fellow sufferers were destroyed prenatally is liable to be looked upon by the community as one unfit to be alive, as a second (or even lower) class human type.” This also contributes to parents’ sometimes “feeling guilty” for their child’s genetic condition, despite these parents’ not having caused it in any morally relevant or active sense. 

There is a difference between seeking to improve a child’s health and wanting to accept only healthy children. There is a difference between wanting the best for children and wanting the best children. It is crucial for us to be able to distinguish justifiable interventions to improve health from immoral calculations to discard life. The fundamental difference lies in respecting the new person as a good in him or herself, not as incidental to achieving some idealized product, nor as a project of their parents’ making. Because genetics is in the realm of science, this information gives us the illusion of being able to know and control the future. But of course, it is mere happenstance that we have knowledge of certain genetic and chromosomal conditions and not of others. We also know from tragically many cases that prenatal screening can be flat out wrong, leading parents and doctors to draw life-altering conclusions based on ambiguous information. As emotionally difficult, ethically complex, and scientifically uncertain as genetic knowledge can be, it will be an increasingly prevalent factor in modern life. How do we meet these challenges and respond rightly to reality? Can genetic information be used for the good of the person, rather than only being a threat to him or her or a basis for unjust discrimination? 

If Knowledge Is Power, Then What Is This Power For? 

A common genetic disorder in North America is cystic fibrosis (CF). Those living with CF experience a range of symptoms and complications, mainly concerning the function of their lungs. Once again, it is worthwhile to read the discussion threads on dedicated social media pages of this community to consider the impact of genetic knowledge and genetic guilt on decision-making. Consider this mother’s post:  

Looking for help. I am 12 weeks pregnant and we just found out that both my husband and I are CF carriers. I had an uncle who had CF and passed away in his 20s but we were completely surprised that my husband was a carrier. Anyway, the OBGYN said she’s referring us to a genetic OBGYN counselor to get further testing (CVS or amniocentesis) to see if the baby has CF. At that point, as she put, “we have a decision to make” if it comes up positive. This question does not come from a place of malice, but I’m looking for some insight from people with CF. You know the trials and tribulations you’ve gone through for so long. If you knew a baby had CF, would you still bring it into this world KNOWING it would have the same struggles? Once again, I apologize if I come off naive or insensitive . . . I really don’t mean to. 

The post provoked no fewer than 187 responses. Like this mother, many are quite literally crowdsourcing genetic counseling and bioethical reflection on social media. Such posts, which are common, show how people grapple with complex decisions in sincere ways that also display a certain audacity to raise questions they might not ask in other settings. 

So what did the commenters have to say? There are a few comments from family members and those living with CF saying that they would not want to bring someone with CF into the world. On the ten-thousand-member CF Facebook page, these comments are undeniably the outliers. By and large, the main tenor of the posts and comments is about how life is worthwhile in spite of the difficulties. Many people living with CF and family members of those with CF commented with photos so to say, “Look at me now!” Here are some of the comments:  

Here’s my 8-month-old CFer! I wouldn’t change one thing. CF is just one thing about him. He still is so many other things & has a whole life ahead of him! There hasn’t been a better time for CF with all the medicines and treatments. I would never ever change a thing! Feel free to message me if you’d like.  

My CFer is nine years old, never been hospitalized, plays competitive soccer on 2 different teams. Aside from her breathing treatments she’s a completely normal kid. When I was pregnant I had no idea my Cosette had CF and I’m so very glad. She’s amazing and even though our life isn’t “normal”, it’s OUR “normal” and I’ve never regretted it once. Everyone has to make their own decision but with all the medications out right now CF is becoming more and more manageable and they are living long and healthy and amazing lives. 

I have a younger brother and a younger cousin who have it as well and seeing how they have benefitted from new medical advances is something I really try to get others to see. People with CF are still normal folks, even though the internet portrays CF as hopeless (which I can’t stand) btw. Of course, any time you hear your child might not be 100% healthy, it’s scary. However, it’s something that’s worth fighting for and not giving up on! 

Absolutely! The CF world has changed drastically and keeps advancing. I just turned 31 on Tuesday, and I wasn’t supposed to see 17. Yes, I did have a double lung transplant at 27, but even going through some trials and battles, I still feel I’m winning! 

It is notable how many comment with encouragement and hope concerning new medications, technological advances, treatments, and especially the benefits of early diagnosis and interventions for improving the person’s condition, lifestyle, and longevity. Often it is those who are affected by certain conditions who become the best advocates for contributing to scientific improvements and medical advances. This is because there is an obvious incentive for those whom these challenges concern personally to be motivated and invested in making improvements for others like themselves or their loved ones who face these conditions. 

Genetic knowledge and prenatal screening should always be directed to the good of the person. And, it is never in the person’s interest not to exist. The sheer existence of any person reveals that this person is wanted, that he or she has a reason for being in the world. We know intuitively that no one deserves to be excluded from the human family. This is why some of the most successful campaigns concerning genetic testing and screening have been conducted under the auspices of ensuring genetic nondiscrimination. We can see how much we need each person and community in the world and observe how they are the concrete answers to people’s probing questions. If ever we accept a criterion under which any person or demographic should not exist, then our own lives and worth becomes insecure. How we accept and receive others amid the uncertainties and risks of life affects the extent to which we can accept ourselves.  

Accepting Our Children, Accepting Ourselves  

Most people do not have much difficulty accepting their strengths. Our insecurities usually stem from contending with our (often-frustrating) vulnerabilities. We are prone to idealism, comparison with others, and sensitivity to their judgments about us. Perhaps for these reasons Henri Nouwen diagnosed self-rejection as the greatest trap. Nouwen described self-rejection as whenever we say to ourselves, “If people really knew me, they wouldn’t love me.” Our limitations can make us feel deficient, inadequate, and even unlovable. But, as scholar Stephan Kampowski points out, “Love is nothing that can be manufactured or technologically enhanced.” By accepting the limitations and fragility of our lives, we discover the actual conditions in which we are specifically invited to love. Saying “no” to these conditions, or attempting to overcome them, only restricts the horizon of our capacity to love. 

A person can better admit his own weaknesses and limitations if he can receive those of another. And a person can only receive life in all its risk and uncertainty with a healthy degree of self-acceptance. A particularly articulate account of this experience can be found in historian Sarah C. Williams’s reflection on the nine months she and her family had with her daughter Cerian:  

When I first found out about Cerian’s deformity and made the choice to carry her to term, it felt like the destruction of my plans and hopes. It went against what I wanted. It limited me. But it was in this place of limitation that God showed me more of his love. Up until this point, the clamor of my desires and wishes had made me like a closed system centered in on myself, on my needs, flaws, and attributes. My life, even at times my religion, had revolved around achievement, reputation, and winning respect and approval from others. I had busied myself with [the] perfect home, perfect children, perfect job, all the things I wanted. I knew I had lost something deep and precious, but I didn’t know what it was. And the more I felt the lack of it, the harder I tried to find it through effort. During the nine months I carried Cerian, God came close to me again unexpectedly, wild and beautiful, good and gracious. I touched his presence as I carried Cerian and as a result I realized that underneath all my other longings lay an aching desire for God himself and for his love. Cerian shamed my strength, and in her weakness and vulnerability, she showed me a way of intimacy. The beauty and completeness of her personhood nullified the value system to which I had subscribed for so long. 

[…] Limitation, finitude, suffering, weakness, disability, and frailty can be gifts. Far from robbing us of our humanity, these things are needed if we are to be human. Without them, we strip ourselves of the opportunity to confer dignity on each other regardless of our physical and mental condition and we lose sight of the essential given-ness of human life. Ultimately, personhood is not a work of self-definition and self-creation. Instead, it is a gift. 

Williams does not conceal her grief and lamentation over her daughter’s diagnosis. She admits the shattering of her hopes and plans and then tells us that her daughter’s weakness shamed her strength and caused her to reconsider her values. By accepting her child, she came to a new and greater acceptance of herself than she ever imagined. Accepting our children (and accepting all the others in our lives who “shame our strength”) is the path to self-acceptance, to our sheer existence being enough to tell us that we are wanted.  

Life: Precarious and Precious

There are many challenges we face in accepting new life, particularly when given a preview through genetic testing of the potential challenges and vulnerabilities a loved one may suffer. From the perspective of those living with various conditions and their families, we find an overwhelming insistence on the value of existence and appreciation of life. While parents sometimes express feelings of guilt for handing on genetic predispositions or for knowing prenatally that their child may suffer because of a chromosomal condition, parents cannot actually be said to be guilty for their children’s genetic makeup because they are not actively responsible for causing it. Parents are responsible for causing their children’s existence and then are responsible for welcoming their children amid the particular circumstances in which they are called to love them. 

Keeping the person at the center of concern maintains our focus on his or her good rather than on our own fears and insecurities. And, each time we practice accepting another in the fullness of their fragility, we come to a healthier, more honest acceptance of ourselves, too.  

Image by Ermolaev Alexandr and licensed via Adobe Stock.