Disability, Prenatal Testing and the Case for a Moral, Compassionate Abortion

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.

Woman thinking by a window with hearts drawn in it.

Her.meneutics, the “for women” arm of Christianity Today, recently ran an article by Sarah Eekhoff Zylstra on prenatal testing:

What You Need to Know About the Hidden Benefits (and Costs) of New Prenatal Tests

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:

  1. Fetishizes disability.
  2. Dehumanizes children.
  3. Downplays economic concerns and long-term viability.
  4. Minimizes the suffering of children and caregivers.
  5. Is logically inconsistent.
  6. Conflates fetuses with born children, and therefore
  7. Devalues labor, delivery and motherhood.
Before we go any farther, here is my main point:
Having an abortion to prevent a child from being born with Down syndrome or another disability can be a positive moral choice. Okay, now let’s go on (assuming you’re not already plotting my demise).

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.

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.

Poor woman with children (historical photograph, 1939).

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% 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.
It is possible to choose abortion based on a positive screening for genetic disorders because you are morally opposed to inflicting suffering on others. It is possible that women who abort fetuses with Down syndrome or more series disorders do it not because they hate Downs people or like genocide or are Selfish Career Bitches(TM), but because they honestly believe it’s what’s best for their families. The anti-abortion crowd is not the only one with a flagpole stuck in the moral high ground.

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.

  • http://susanbarackman.freeservers.com/ Esbee

    Reading your article was very thought provoking. Ultimately it is up to the parents to follow God on each decision. But it is interesting where those thoughts led me…back to the OT where God would send his people to wipe out certain peoples. He told them to kill everyone, including babies and young children…perhaps that was a mercy because those babies and children would have grown up to be the same kind of peoples that were killed off, those that sacrificed their children to Molech or did other evil acts. (From what I read about cultures in that time, some were very evil and perverted.) But death at such a young age and before the age of consent, they went to heaven. So, never knowing life, they also never knew hell.

    Same thing today…when babies are aborted they go to heaven. Had they been allowed to live they might have been born into poverty and abuse with a mother who does drugs. The child would continue the cycle and perhaps commit crimes.

    • http://gravatar.com/meallaaoi meallaaoi

      Esbee, I’m not sure I completely understand where you’re coming from when you say:

      “… those babies and children would have grown up to be the same kind of peoples that were killed off, those that sacrificed their children to Molech or did other evil acts…”

      I think I’m having a problem with two pieces of it. (Full disclosure, here; I was raised Jewish so I grew up studying the Old Testament. I just like learning about other religious beliefs.)

      1) I assume (please correct me if I’m wrong) that you’re referring to when the Children of Israel were conquering the Promised Land after their 40 years in the desert. If that is the case, then the Israelites would have wiped out all of these infant’s cultures. They would have killed the adults, destroyed the ritual spaces, and purged the towns and villages of their ‘heathen’ beliefs. So if their entire culture no longer exists, and these infants are being raised by Israelites, how would they have grown into the ‘same kind of peoples that were killed off’? I think assuming they would have does a huge disservice to the effect of childhood environment on a person.

      2) Not all the cultures that were destroyed by the Israelites were evil. Many of them were just going about their lives, trying to be at peace with their neighbors, and then they were obliterated by this outside force. I feel that to assume these civilizations were inherently evil because God said so is as presumptuous as for a Muslim to say all Christians are inherently evil just because Allah says so.

      Please know I’m not trying to attack your beliefs, Esbee. I’d just like to understand your point of view a little better.

      Thank you in advance (or anyone else who wants to help me out) for the discussion.

      • http://susanbarackman.freeservers.com/ Esbee

        good points- I was just saying that God in the OT did tell the Israelites to wipe out certain groups to every last man, woman and child, even the animals. There had to be reasons. Perhaps they were the groups that practiced sacrificing babies to their gods. Perhaps they had some sort of incureable disease. But when a baby or child dies it goes to heaven. And children even those raised by adopted parents often inherit certain personality traits (i.e. quick temper, etc).

        I am in no ways an expert on OT history/cultures but just expressing my opinion of why God may have wanted whole cultures wiped out, besides the obvious one that He did not want His people to be influenced by ungodly cultures that practiced idolatry or sexual perversion.

  • http://clarissasblogdotcom.wordpress.com bloggerclarissa

    What a brilliant post! You treat a very complex subject with compassion and insight. As an autistic, I support your point of view 100%.

    • Jennifer

      As an autistic, I don’t.

  • C

    I just wanted to say thank you for the first point that people with disabilities are not high class pets. And I say this as not someone who has an ‘invisible disability’ but also grew up in a household with physical and mental disabled sibling. It makes my stomach twist and turn when I hear about the fetishization and how special or bless someone is to have a disability. I knew my brother wished he didn’t have to have people to help him get into a wheelchair and I know I wish I could memorize things (especially from 2 minutes ago) and use language like everyone else. I would also say off hand, that is was more expensive for my parents to raise my brother than the combine of my other brother and I. Wheelchairs and specialized appliances (walk in shower, higher seat toilet, guard rails) all add up and that doesn’t include doctor appointments.

  • Alana

    I’ve been wondering how to fight against arguments like the ones you quote for a long time. Thank you.

  • http://tellmewhytheworldisweird.blogspot.com/ perfectnumber628

    Thanks for writing this- it gives me a lot to think about.

  • http://jilldomschot.com jilldomschot

    I agree that they’re using bad rhetoric to sway public opinion (in reference to your point 1 about fetishizing disabilities). It would be better for pro-lifers to simply acknowledge the personhood of all children, which would bring the argument back to the more fundamental question of when personhood begins. And, honestly, for consistency’s sake, pro-lifers need to create a hedge of protection and support for families with disabled children so that their needs will be met–all of them, including those of the healthy children. Talk is cheap. This is the same advice I give to Christians who protest against Planned Parenthood–”If you don’t like them, start your own grassroots health clinic that provides health services, including birth control [to prevent against abortion], to poor women.” Christians need to do a little less talking and a lot more acting on principles.

    “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.” This is a biblical concept. Christians are supposed to provide and care for others, not just say “God bless you” and send them on their way.

    I don’t know what to do about the issues of pain. I’m very conflicted about all of this. To live is pain. Ultimately, the only way to avoid it is to not live. Our knowledge comes with heavy burdens.

  • Paula G V aka Yukimi

    It’s an awesome breakdown of a pretty controversial issue. I’m sure to redirect here to the next person who debates me about it.

    Btw, welcome to Patheos!!

    (I would have though you would end in Spirituality but you are on your own like No Longer Quivering. I like it ^^

  • lucrezaborgia

    One of my family members was born with profound disabilities. This was back in the early 90′s so I’m pretty sure that no one had any idea about his disabilities before birth, but even if they had known, they were very devout evangelicals and would not have aborted. However, the entire 12 years of his life was suffering IMO. No one ever helped them, not family, not the church, not even the father. My aunt had to do it all herself. When he died at the age of 12 a wave of relief flooded through the family. I wonder what they would say in this situation? My aunt never felt blessed by her son.

    As for myself, if I were still living in Miami I would most likely have aborted a child with Downs. There are no services there to help them. When I moved to Wisconsin, I was floored by the amount of people with Downs who were independent thanks to social services. I mean truly independent! Worked jobs, got around town on public transit, and did their own thing with minimal supervision.

    What scares me tho is the amount of evangelicals adopting children with disabilities and thinking that all they need is love to turn these children’s lives around. I saw a blog of a woman who already has 5 children who are disabled…two of which were toddlers with downs who were about the same age…and looking to adopt yet another severely disabled child. Google “special needs adoption” and evangelical and you will see what I mean. These children are then trotted out to churches and whatnot as examples of how awesome raising disabled children is and how godly they all are…makes me sick!

    • http://autistscorner.blogspot.com Lindsay

      What scares me tho is the amount of evangelicals adopting children with disabilities and thinking that all they need is love to turn these children’s lives around.

      You and me both, lady!

  • A Reader

    I loved this post–it was a really complex look at the actual factors in making a decision as big as this. Thank you.

  • http://autistscorner.blogspot.com Lindsay

    Hey there,

    I thought I would add a(nother) perspective from someone who actually has a developmental disability. I like your post, and I pretty much believe as you do — even though I would be sad to think that people like me (autistic) would not be born in the same numbers we are now if a prenatal test were ever developed, and even though I would choose to be autistic again if I could, I still would not force a woman to have a child she didn’t think she could care for, or even didn’t *want* to care for.

    Where I differ from you is in this:

    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. … If I could prevent my own child from being born into a life like that, I would. I consider it my moral imperative.

    I don’t dispute that I, or your hypothetical person with Down syndrome, or any other disabled person, am objectively impaired in some ways that make certain things harder, or even impossible, but I think a lot of the things that have the biggest impact on my life do not derive from my impairments but from society’s. I don’t think I would be chronically unemployed, and dependent on my parents, if people were not afraid to hire people like me.

    So I think your point about disability being objectively bad, and something one should always seek to prevent, needs qualification. I do not want not to be autistic. I want not to be treated poorly because I am autistic. I want to live in a society that is better able to include people who might need some help in certain areas, and one where you don’t have to be 100% independent and self-supporting or 100% dependent on someone else. I want to live in a society that doesn’t throw people away. So, while I don’t really disagree with anything you say in the post — I enthusiastically endorse almost all of it, and what I don’t enthusiastically endorse I have more of a “yes, but …” attitude toward it than “Hell, no!” — I think it could’ve benefited from more thought about the social model of disability.

    However, you are absolutely right that people who think raising a disabled child is some magically uplifting, spiritual experience are objectifying the disabled person and making it all about the non-disabled parent. That drives me batty both as a feminist and as a disabled person, particularly as an autistic person, when autistic children are so frequently abused, neglected, and even murdered by their supposedly saintly parents. The “uplifting spiritual experience” rhetoric is just another side of the rhetoric that excuses parents who abuse or murder their disabled children, the rhetoric that says caring for such a child is too hard, that disabled people are a burden, that no one should ever have to take care of one.

    Also, randomly: your question about a hypothetical in-utero cure for Down syndrome. Why would anyone opt out, when it made the fetus normal without harming it? Well, let’s apply this to autism, since that’s relevant to me. I would opt out, because I believe I would be a better parent to an autistic child than to a neurotypical one. My own experiences in childhood would be relevant, and help guide me, and I’d have a much better chance of intuitively knowing what it is my child needs. So there you are.

    • Sierra

      Thank you so much for your nuanced response and for pointing out the flaws in our social structure that makes life with a disability harder than it needs to be. I very much agree that our social structure needs to be overhauled so that it doesn’t continue to throw roadblocks in the path of anyone who isn’t an able-bodied, white, straight, wealthy cis male.

  • Joeyjojo

    Your whole basis of morality is based on the assumption (belief even) that a fetus only becomes human when it sticks it’s head outside it’s mother. A belief not supported by a single modern text book on embryonics.

    If you’re not willing to smother a disabled newborn to save it pain you should not feel justified it having it aborted.

    I’m not even Euthanasia of newborn is wrong or immoral. You just can’t logically say it’s any different.

    • Sierra

      You can logically say it’s different because birth (not just crowning, which you describe) separates a fetus from its mother. It becomes an individual. It’s not an assumption, but a deep-seated belief that still undergirds Western law. When you are born, you get a birth certificate. You begin to exist as a separate being. You are capable of receiving sustenance from people other than your biological mother.

      My argument applies to fetuses and fetuses only. Do not pretend otherwise.

  • Joeyjojo

    It’s a deep held belief, but that’s all it is. There’s no coherent rational to birth as the definitive start of personhood. The legal concept of ‘first breath” is nothing then an a painfully out dated example of mythicization.

    Your argument applies to fetuses however the fact remains there is no fundamental reason why it can not be applied to neonates.

    Birth is a relativly minor milestone in a human beings lifespan.

    • Sierra

      There is indeed a coherent rationale, which I just gave you and you deliberately chose to ignore. Birth separates a fetus from its mother. It no longer relies on her for life support. Therefore, it becomes an independent being. Your deliberate obfuscation is not a “fact” and your insistence that birth is a “minor” event erases the contributions of the mother, without whom a fetus cannot even exist.

  • Joeyjojo

    I did not ignore your rationale, I just wasn’t convinced by it. A fetus under goes no radical physical changes durning birth.  This is a ‘fact’ as you would say and to claim otherwise would be denialism.  

    Wonen do have the unique responsibly of carry and birthing a child I do acknowledge that but I disagree with you assumption it’s some how fundemetally any different from any other type child care and requires it’s own set of moral and legal princebles.

    You bring up the issues of life support. Tell me what is your opinion pulling the plug on heavily disabled newborns? It is surely often an act of mercy on mother and child as well is it not?

    • Sierra

      Your “fact” is untrue:

      You disagree with the “assumption” that carrying and birthing a child is different from other forms of child care, eh? Do tell me how many fathers, older siblings, day care workers and teachers carry children inside their own bodies and undergo permanent physical changes to support them? Your disdain for maternal labor is astonishing.

      “Pulling the plug” is not equivalent to abortion because life support machines are not people with their own lives to lead. Women are. A newborn on a life support machine is not dependent on a single person, but on a medical staff that keeps the machine running and the infant’s needs met. No single person is required to care for the infant 24/7. I have never advocated “mercy killing” or infanticide, and your attempts to make my views on abortion equivalent to them only reveal your own misogynist assumptions.

  • Joeyjojo

    You talk of prevent stuffering of fulture children and their careers, yet you refuse to apply you own reasoning to the stuffering of those all ready here becuase of,what, some arbitrary legal definition of personhood?

    I’m not upset or outraged, I just don’t understand how you can defend preventing disabity yet passively accept condemning such a fate on the living and born. Is their stuffer ready to be endured with out such intervention?

    • Sierra

      1. You can’t prevent what’s already happened to someone.

      2. The definition of personhood, as I have repeatedly demonstrated, is not merely a legal matter, nor is it arbitrary. It only looks that way if you deliberately ignore the role of the woman, which is counterfactual and misogynist.

      3. I don’t even know what you’re trying to argue in that second half of that comment.

      • Jennifer

        Well, of course you can’t prevent what’s already happened to some one. That’s the flaw in logic of your entire article. Aborting a disabled fetus doesn’t make it into a nondisabled person, it just prevents it from living. That’s the difference between FAS and Down Syndrome, and I can’t get how you can’t see that. FAS turns a nondisabled fetus into a disabled person. It can be prevented by simply not drinking. The genes that cause Down Syndrome are present from conception and can’t be changed. It can’t be prevented, it can only be eradicated by termination. If you terminate a DS baby, you are saying that the lives of people with DS are not worth living. In fact, that is the entire crux of your own argument. You can’t “inflict harm” in someone by giving birth to them. The “harm” is already there. Well, it can be limited, but only by ending the fetus’s existence, and therefore any pleasure they may feel as future people. You are assuming there is nothing mitigating that harm. Do you really think people with DS and other disabilities can’t be happy? Because studies have shown that most people with DS ARE happy. You’re making a judgment about how other people must feel about their own lives, based on nothing more than your assumption of how you would feel. If anything is “appropriation,” it’s that.

        The choice in DS is not between a disabled person and a nondisabled person. It’s between a disabled person and NO person. And I’m pro choice, too, but you really don’t seem to be seeing how advocating disability as a particularly compelling reason for abortion does hurt those currently living with disabilities. Especially when you go to the length that you do in this article of implying a RESPONSIBLY (not just option) to abort in order to “prevent suffering.” Everyone suffers. No one has a crystal ball to predict exactly how much anyone will suffer in the future, particular when that person isn’t even born yet.

        Oh, by the way, thanks for patronizing me right in your introduction. Protip for the future: Most people don’t like to be told to “calm down,” particularly before you’re even made your argument.

        • Sierra

          I’m not advocating it as a “particularly” compelling reason, but responding to an article that singles it out as a particularly heinous reason for choosing abortion. Nowhere did I say that abortion based on disability was somehow *more* moral than other reasons for abortion.

          The difference in your logic is that you see a particular fetus as necessary. I understand, but reject, the argument that a fetus’s genetic individuality ought to be taken into account, because I see that argument conferring personhood on a non-person. The choice is between a particular fetus that exists and a different fetus that can be conceived later. I argue the same thing with regard to sex-selective abortion or abortion based on the woman’s financial stability. She has the choice to get pregnant again after an abortion, as many do.

  • Mklein

    This article falls prey to a common fallacy in the way we view disability: that the disability is something separate and external from the person’s essence, and that the person could exist as himself/herself without it. Therefore, by this logic, it’s possible to respect people with disabilities while simultaneously trying to end the existence of the disability itself, by preventing and curing it.
    I’m not going to sit here and tell you that every person with a disability would disagree with that. But I will tell you that as a person with disabilities who follows the disability rights struggle, I believe the majority of us would. Sure, things purely physical like cystic fibrosis – maybe you’d still have the same person. But not with “invisible disability” – not Down Syndrome, not autism. Also, it’s not like you could separately abort the disability and keep the rest of the fetus – you’re not “giving them a chance to be born healthy.” You’re not giving them a chance to be born at all.
    I support a woman’s right to choose in any case, including the case of disability. But I have never heard a person with a disability say “I wish I had been aborted.” I’m sure some have, but it’s not common. We had no opportunity to NOT be born this way, only the opportunity to be born or not, period. Most of us would rather have our lives than no life at all. To me, that’s what’s offensive about this post: the implication that no life at all is preferable to a life with disability. I’m sorry, you cannot give us the respect and support we need in order to have equal rights and opportunities in this countries while believing that our lives have so little value. This post is in support of eugenics, and that’s all there is to it. It’s full of Ablebodied/Neurotypical Privilege, and I’m disappointed with this site.

    • Sierra

      The logic behind having “the opportunity to be born or not” implies that a fetus already possesses a measure of individuality and personhood that I do not believe exists. Fetuses are potential. The statement “I wish I had been aborted” (or not) is misleading because it necessarily is said AFTER the person has already been born. Projecting the value of a living person back onto a fetus is disingenuous and only serves to limit a woman’s choices or shame her for making them.

      This post would only support eugenics if it were situated outside the individual, private choice of a pregnant woman or was made out to be a special case. It is neither.