Note: If the headline didn’t already clue you in, this is controversial subject matter. If you come away from this article thinking that I advocate genocide of a disabled population or the coercion of women pregnant with disabled fetuses into abortion, that I hate disabled people or think that Down syndrome people don’t deserve to live, you have failed to understand my point. Please walk away from the computer, breathe deeply, and start again from the beginning.
I believe that it is possible and desirable to respect disabled people while still working to eliminate genetic disorders so that children who might have had Down syndrome or cystic fibrosis (or any other disease) have a chance to be born without them. I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people. I am firmly pro-choice, and I believe strongly that the wellbeing of all born persons in a family is paramount before considering the needs of a fetus. My position is that fetuses are incapable of being self-aware and therefore cannot experience suffering the way born persons do. The prevention of suffering is central to my moral beliefs.
If you’re already angry, please stop reading and go get yourself a nice cappuccino. Have a beautiful day. And then, if you still really want to read this, take frequent breaks to punch a pillow with a “hello, my name is Sierra” badge stuck to it.
Her.meneutics, the “for women” arm of Christianity Today, recently ran an article by Sarah Eekhoff Zylstra on prenatal testing:
Apparently, science can do something awesome: tell you the genome of your fetus within the second trimester:
Using a blood sample from the mother and saliva from the father, scientists at the University of Washington mapped out the entire genome of a child while he was in the womb. The discovery, which was published June 6 in Science Translational Medicine, makes it possible to spot disorders from sickle cell disease to cystic fibrosis to Down syndrome in the second trimester of pregnancy.
Best of all, at least for those of us who shiver at the thought of an amniocentesis, is that it’s noninvasive.
About 10 percent of the free-floating DNA in a mother’s blood belongs to her baby, and by comparing her blood with her own and the father’s DNA, scientists can pinpoint which DNA belongs to the baby. From there, they can sequence the child’s entire DNA code. Or at least, they can get pretty close. Their accuracy rate was about 98 percent in the infant boy they tested.
Zylstra says that, “at first blush,” this information looks “incredible.” Yes, it does. Because it is. This kind of technology gives us more control over our own reproduction, which means that we’re better able to make ethical decisions about our parenting. As Zylstra points out, parents who are expecting a special needs child can prepare in advance for what that means.
But there’s a catch, says Zylstra:
You can be emotionally prepared for his birth. You could choose a C-section if that was warranted, or line up services for him, or join a support group. Or abort him.That’s the rub, said Gene Rudd, president of the Christian Medical and Dental Associations.
It’s hard to imagine this test wouldn’t be the instigation of selective abortions, since many women with prenatal diagnoses of Down syndrome currently abort, he said.
“It’s search and destroy that we do that now with Downs,” he said. “And to what benefit do we do that? If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”
It’s a life worth living, and many see that, says Amy Julia Becker, who has written extensively about her daughter with Down syndrome. Heart conditions and respiratory troubles often suffered by those with Down syndrome can be treated, life expectancy has risen from 25 to 60, and by all accounts, raising a son or daughter with Down syndrome can be a wonderful gift. The numbers are tricky, but Becker says that about 70 percent of babies prenatally diagnosed with Down syndrome are aborted.
“Ultimately, the problem is that we have a society that says it’s okay to kill unborn babies,” Rudd told me. “If that weren’t permissible, this information wouldn’t be misused.” Prenatal testing in a country with legal abortion lets parents decide if that child is “good enough” to live, he said. But as imperfect, capricious, sinful beings, how do we figure we’re smart enough, or good enough, to judge anybody else’s shot at life?
“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”
There are a lot of pieces to this pie, so I’m going to address them problem-by-problem. Ready? Here we go. This article:
- Fetishizes disability.
- Dehumanizes children.
- Downplays economic concerns and long-term viability.
- Minimizes the suffering of children and caregivers.
- Is logically inconsistent.
- Conflates fetuses with born children, and therefore
- Devalues labor, delivery and motherhood.
1. Fetishizing disability
The disability rights movement is hugely important and I support it. It’s especially vital for individuals with mental illnesses, who are often judged as “not really disabled” because there’s nothing visibly wrong with them. Disabled people have a long history of being medically abused, used as test subjects without consent, being abandoned or forced to live in squalor, and being generally reviled, disrespected and treated like freaks. We need a movement to rectify that and prevent it from ever happening again. I’m glad we have one.
Now. Here’s where I depart from Zylstra and other activists.
Respecting the rights of disabled people does not mean honoring or celebrating disability itself. Apart from the perspective and political activism that many disabled people have found via their experiences as a discriminated-against class, I’d wager most people who are disabled would rather not be. Just like poor people value their wisdom but would really rather not be poor. I’ve been a poor kid. I’m still pretty poor. I’ve learned a hell of a lot about empathy from being poor. But would I choose to be poor? No. Would I want others to be poor kids? No. Would I jump at the chance to end poverty once and for all? Yes! I want people to listen to what I’ve learned, but I don’t want them all to have to learn it the hard way, like I did. I would wager that at least some disabled people feel the same.
When you argue that children with Down syndrome are “special gifts” or that raising them is a “rewarding experience” for parents, you are appropriating their difficulties and fetishizing their difference. That is the opposite of respecting a disabled person. I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available? Would they choose to suffer disabilities just so that their parents could have the “reward” and “special gift” of raising them?
Amy Julia Becker of Thin Places writes:
I hate the thought that there will be fewer people with Down syndrome in the world as a result of advances in prenatal testing. As I’ve written before, it impoverishes us all when we selectively abort babies based upon particular characteristics (gender, for instance, in China and India… disabilities here in America).
I understand this argument. I do. I get how parents of Downs children learn from their experiences and love their children fiercely and imagine how empty and cold the world would be without children like theirs. But this line of reasoning makes me profoundly uncomfortable. By all means, love your child! By all means, share your hard-earned wisdom! But to wish for Down syndrome to never go away? to never be cured? Why would you wish that?
I can’t help but think that it’s not about the children’s quality of life (wouldn’t you choose a life for your child that didn’t include Downs, if you could?) but about the parents’ inability to distinguish between their love for their kids and the condition their kids suffer from. By all means, celebrate your child and his or her wonderful uniqueness! (I say this without irony.) But don’t reduce your child to the mere fact of having Downs, as though having Downs makes them a kind of endangered species and that Down syndrome must continue forever because kids like yours would never exist again without it. Your child would be special, you would have that bond, with or without Downs.
Wanting to eradicate a condition that causes suffering or dependence in a population is not the same as wanting that population to die. Imagine for a moment that we’re not talking about abortion. If it were possible to “cure” Down syndrome prenatally, preserving the same fetus, would you deny your child the treatment because you’d hate to see fewer Down syndrome children in the world?
Which brings me to #2:
2. Dehumanizing children
Focusing on the “rewards” to parents of raising a special needs child means privileging parents’ personal growth over the best interests of their potential child. If parents choose to bring into this world a child that cannot be reasonably expected to care for himself as an adult, they are gambling with their child’s future. Who will care for him or her when the parents are gone? Do they have the resources to provide for their child’s medical needs? Do they have other children who would be neglected because of their parents’ intense focus on caring for the special needs child?
Now, I understand that many, many Downs people are able to function in the world without immediate care, but others can’t. I think it’s awfully brazen and selfish not to consider one’s potential child’s quality of life for the entire duration of that child’s life before deciding what to do. I think it’s necessary to ask tough questions of yourself, to honestly answer the question of whether or not you can provide that child with everything he or she will need for life.
Special needs children aren’t high-maintenance pets that exist to teach you lessons about fortitude and compassion. They are people. And it’s because a special needs fetus will become a person at birth that abortion should be on the table. Responsible, moral reproductive choices involve doing the hard math and yes, making decisions to either give your child the best possible long, independent life or to terminate the pregnancy early if you know you can’t.
It intrigues me that religious people, the ones who are the first to point out the flaws and fallen nature of the world, are the last to acknowledge the result: that horrible things happen, and those situations require hard decisions. Birth defects and excruciating diseases happen. To refuse to act to minimize suffering (indeed, to prevent it) is at best selfish and at worst abusive. To pretend that there is always a perfect answer to a problem in this imperfect world is to effectively close your eyes and live in your own imagination.
Not every family can afford the medical care of a special needs child. Not every family can afford the time spent caring for a special needs child, especially if they already have multiple children. To demand that families that know they lack these resources nonetheless give up everything to bring a child into a world where it will be neglected, inadequately treated by doctors, and in all likelihood end up in foster care or, as an adult, homeless, is cruelly insane. To focus on mere “life” to the exclusion of the quality thereof is not just stupid, it’s evil. It is deliberately inflicting suffering on others to soothe your own conscience.
And in case you’re wondering, the cost of a lifetime of care for a Down syndrome child has been recently estimated at 2.9 million dollars.
(Though, given that the estimate was made in the context of a lawsuit, it’s probably a little on the high side.)
4. Minimizing the Needs of Others
Parents and caregivers are people, too. They do not forfeit their own needs when they have children; indeed, doing so is actually harmful to children. Recall the many times I’ve said that having a stay-at-home mother made me feel hopeless and guilty about becoming a woman. I was put in the impossible position of either following in her footsteps, thereby ensuring that every female in our line would do nothing but sacrifice for her children and never get to have her own dreams, or not following in her footsteps and feeling guilty that I was (a) rejecting her by rejecting her lifestyle and (b) doing my own potential children some kind of injustice, even though I didn’t want my children facing the quandary I was! I wished my mother had more of a life outside of raising me, because then I would be freer to have a life, too.
If parents choose to welcome a special needs child into their family, they must consider how it will affect not only that child, but also themselves and their other children. They must make room for breaks and self-care to preserve their own health, mental and physical. In my own church, there was a woman with two children who got pregnant and found out her child had a fatal defect. She decided against having an abortion, believing that God would honor her and heal her child (or at least provide for it). The child lived 13 years in unspeakable pain, without cognition, undergoing surgery after surgery until she died – and by this time the family had exhausted its resources, the other two children had been practically abandoned. The mother had worked herself to the bone, endured a failed promise from God, and had to mourn the child all over again at the end of it all. That child was not a “blessing.” It was not a “rewarding” experience – though the mother might tell you so out of sheer love and the need to justify her situation. The child’s birth destroyed her family, and she was never even aware enough of her own existence to realize she was loved. How is that the hand of God?
5. Logical Inconsistency
First, we get the argument that raising a special needs child is a blessing:
[Says Rudd:] “If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”
That is abhorrent abuse of statistics. First, your entire sample (people who have chosen not to abort) is already biased toward the belief that what they’re doing is rewarding. Where are the surveys for women who chose to abort Downs fetuses? You’re comparing this 97% to an empty page. They might say that their abortion was a blessing, but you can’t print that, can you? Not on a Christian blog.
Second, the parenting discourse in Western culture is so punitive that parents of “typical” children aren’t even free to express that they dislike the drudgery of parenting without being accused of being sociopaths and hating their kids. That’s why such statements as “I hate being a mom” show up anonymously on Secret Confessions and have been called the Greatest American Taboo. How much more pressure is there on parents of special needs kids never to admit that they wish they weren’t?
Then, we get this:
“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”
Little is different about a younger child. Everything is different about a fetus. A fetus does not have cognition. A fetus lives inside a woman’s body. A fetus has never drawn a breath. A fetus has not lived a life to miss. Those are significant differences.
Also, when did we go from talking about the relative independence of some Downs individuals to the horrible suffering inflicted by cystic fibrosis? Read this description and see if you think it’s an apt comparison: Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with CF who live to adulthood is approximately 37 years, a dramatic increase over the last three decades. Death is usually caused by lung complications.
Would you utter a sentence like this?: I hate the thought that there will be fewer people with cystic fibrosis in the world as a result of advances in prenatal testing. Would you tell parents how “rewarding” it is to raise a child with cystic fibrosis? Who are we to say that the disease is overwhelmingly terrible? Rudd asks. Well, here’s who we are: Caring parents. Compassionate, educated doctors. People who don’t want to inflict unnecessary suffering by bringing a not-yet-conscious fetus into the world to experience a waking nightmare and die, choking or suffocating, at half the normal life expectancy. That’s who.
There’s also the little problem that the article jumps back and forth between arguing about the intrinsic worth of life and the rewards of being a caregiver. These two competing perspectives make the argument hard to follow.
6 + 7. Erasing Motherhood
It’s a common trope of the pro-life movement that “a moment before birth” a fetus is a baby, and therefore abortion is the same as infanticide. This is not only scientifically inaccurate, it’s misogynistic. It erases the woman, her wellbeing and her labor from the entire equation. Childbirth is momentous. It matters. It is not just a legal flagpole where personhood is arbitrarily assigned. It is the moment at which a child begins to occupy the world as an independent being.
It is also a moment made possible by the bodily work (pain, sweat, blood and tears) of a woman. If we grew children in plastic incubators with green fluid and Classical music playing gently in the background, then the “moment before birth” comparison might be apt. But it isn’t, because children live in their own bodies, and fetuses live in their mothers’. While that fetus is in its mother’s body, she does have sovereignty over the decision whether or not to bring the child into the world. That is her sacred right as a mother. It is her sacred right as a woman not to have her body violated against her will – be it by another adult, a child or a fetus. Alone, a fetus cannot be brought into the world to become a baby. Therefore, you can’t talk about a fetus as though it exists without regard for the woman upon whom its existence depends. To alienate the pregnant woman from a discussion about pregnancy is like having a conversation about the weather on an asteroid.
Zylstra concludes her article:
It’s not that the test is bad. To be able to map a child’s DNA while they’re still in the womb is fascinating. But so is the fact that many mothers believe that it would be worse to live in an imperfect body than not to live at all.
There’s a huge problem here. Cystic fibrosis is a serious disease. Downs syndrome can be serious. Genetic diseases can leave children’s independence stalled, their mobility hampered, their bodies aching, their minds wracked with torturous bouts of depression and anger, their futures uncertain and their families stressed to the breaking point. This isn’t about perfect and imperfect bodies. This is not the difference between passing on genes correlated with overweight and comparing your potential child to fitness models. The perfect/imperfect body dichotomy is a red herring. No body is perfect. It’s disingenuous and manipulative to assert that having a serious genetic disorder is equivalent to having a few pimples and a crooked nose.
If I somehow (metaphysics be damned!) had a choice to be born in a body that would slowly disintegrate on me, like that of Stephen Hawking, or not to be born at all, I’d pick the latter. This does not mean that I think Stephen Hawking shouldn’t be alive. He is a great scientist. He has done marvelous things with his life. But that does not make the pain and horror of his situation any less. If I could prevent my own child from being born into a life like that, I would. I consider it my moral imperative. And if Stephen Hawking and I were hanging out in the metaphysical waiting room before descending to earth, and he told me he didn’t want to be born into all that suffering, it would be unfathomably selfish of me to demand that he endure what he has endured just so that I (and other healthful people) could benefit from his mind.
If you made it this far, congratulations. Here’s the rundown:
- Respect disabled people for their personhood, but don’t promote the continued existence of disabilities. That doesn’t do anyone any favors.
- Don’t treat disabled children as special projects to improve their parents’ character.
- Don’t act like everybody can afford to live by your conscience.
- Don’t prioritize the wellbeing of a fetus over the entire family.
- Don’t force special needs children into families that don’t want them, and will abuse, neglect or abandon them. They have it hard enough in families that want them and have the resources to care for them.
- Don’t conflate serious disorders with minor imperfections to guilt parents into a choice to raise a child they don’t want to have.
- Don’t abuse statistics to lie about the satisfaction rate of parents with special needs children.
- Don’t minimize the labor of mothers or pretend that you can talk about fetuses without women.
Now, finally, a thought experiment.
Why is it a “blessing” and a “rewarding” experience to raise a child with Down syndrome, but not one with Fetal Alcohol Syndrome? If there’s something inherently valuable about disabilities themselves that improves the lives of people who have them and whose loved ones have them, why does the origin of the disability make such a difference? Why is taking every precaution to avoid FAS, to the point of making pregnant women neurotic, a worthwhile societal goal? Why does no one hate to imagine a world in which there are no children with FAS?
I suspect the answer has something to do with control. Because if you can control an outcome (or at least think you can), people will be justified in blaming you for an adverse outcome. But if you can’t prevent suffering (or think you can’t), your reputation remains untarnished. If you see suffering in your future and evade it, those who are suffering will attack you for your selfishness and arrogance. (“How dare you have it so easy?”) But is that feeling of moral superiority actually moral superiority? I don’t think so. It sounds more like a cry of pain at the unfairness of the world – which is something we should be trying to fix, not perpetuate.