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 from which their kids suffer. 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.

Clinging to a soundbyte belief system that makes your decisions for you (“Abortion is murder!”) or abdicating responsibility (“God will provide as long as I don’t get an abortion!”) means shirking your fundamental duty as a parent: to make decisions with your child’s best interests at heart until your child can do so herself. That responsibility may lead you to give birth to and raise a disabled child – and more power to you! – as long as you’re doing it with your eyes open and taking every possible precaution to make sure you can deliver on the promise of care you are making your newborn child. But it may also mean having an abortion.

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.

3. Classism

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 percent 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.

My Points:

If you made it this far, congratulations. Here’s the rundown:

1. Respect disabled people for their personhood, but don’t promote the continued existence of disabilities. That doesn’t do anyone any favors.
2. Don’t treat disabled children as special projects to improve their parents’ character.
3. Don’t act like everybody can afford to live by your conscience.
4. Don’t prioritize the wellbeing of a fetus over the entire family.
5. 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.
6. Don’t conflate serious disorders with minor imperfections to guilt parents into a choice to raise a child they don’t want to have.
7. Don’t abuse statistics to lie about the satisfaction rate of parents with special needs children.
8. Don’t minimize the labor of mothers or pretend that you can talk about fetuses without women.

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.

Sierra is a PhD student living in the Midwest. She was raised in a “Message of the Hour” congregation that followed the ministry of William Branham. She left the Message in 2006 and is the author of the blog The Phoenix and the Olive Branch.