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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).

Written by Vyckie Garrison for RH Reality Check. This diary is cross-posted; commenters wishing to engage directly with the author should do so at the original post.

by Sierra @No Longer Quivering

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:

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 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 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.
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.

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.

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Comment Preferences

  •  I have my own story for compassionate abortions. (12+ / 0-)

    For several years I worked as a tutor for elementary students in an acute care Psychiatric Hospital. Most of our patiients were young girls, (as young as six) who had been sexually abused, most often by members of their own families.  Preganant girls and their family (again often their abuser) and doctor would make the decision re: live birth or abortion.  When I say elementary aged girls, I mean the oldest girls I tutored were in 8th grade, about 13 years old.  The idea of the no-exception rule which the Republican Right is pushing is repulsive. to me.  Such a rule is like giving a licence to rape to child abusers.

  •  Does balanced translocation justify sterilization? (2+ / 0-)
    Recommended by:
    LadyMiseryAli, drmah

    Would that be compassionate sterilization?

    Translocation Down syndrome can be inherited. An unaffected person can carry a rearrangement of genetic material between chromosome 21 and another chromosome. This rearrangement is called a balanced translocation because there is no extra material from chromosome 21. Although they do not have signs of Down syndrome, people who carry this type of balanced translocation are at an increased risk of having children with the condition..
    http://www.paliwoda.com/...

    "If the past sits in judgment on the present, the future will be lost." Winston Churchill

    by Kvetchnrelease on Fri Aug 17, 2012 at 12:44:59 PM PDT

    •  it justifies informing people who... (9+ / 0-)

      .... are seeking to become parents, so they can weigh the situation and come to their own conclusions about it.  

      Prospective parents have an unalienable right to 100% of current scientifically available information about their personal genetic risks, so they can make their own reproductive choices.

      And there should not be "consequences" such as denial of insurance coverage (or increased costs thereof) to a family, should they choose to have a kid and their kid turns out to need special medical care and lifetime support.  

       

      "Minus two votes for the Democrat" equals "plus one vote for the Republican." Arithmetic doesn't care about your feelings.

      by G2geek on Fri Aug 17, 2012 at 12:59:44 PM PDT

      [ Parent ]

    •  It would be compassionate to choose sterilization (2+ / 0-)
      Recommended by:
      drmah, BlackSheep1

      for yourself knowing you have the condition.

  •  tipped & recced for: overcoming taboos. (10+ / 0-)

    This is a touchy subject and diarist handled it well.

    To my mind the conclusive arguement here is: who will take care of someone with e.g. Down syndrome, after the parents have died?   Will they suddenly be left without anyone to care for them, and end up thrown mercilessly into the social darwinist nightmare that our society has become?  Will they depend on their aging sibling(s) who may have moved to other parts of the US or the world, and may not have the resources to do the tasks that are required?  

    The answer is:  The people who are yowling so loudly about not choosing compassionate abortion, have exactly ZERO moral standing unless they first work to ensure that every single child born with life-changing disabilities has full access to 100% of the care they will need, for their entire lives, regardless of their personal or family financial resources.  

    And bankrupting the parents (and siblings?) first, before society's resources kick in, doesn't cut it either.  

    Every special needs kid, every person with a disability that precludes working or living without assistance, should have 100% socialized coverage of the cost of their care for their entire lives.  That's a moral battle that has to be fought and won.  

    "Minus two votes for the Democrat" equals "plus one vote for the Republican." Arithmetic doesn't care about your feelings.

    by G2geek on Fri Aug 17, 2012 at 12:55:20 PM PDT

    •  Even socialized care does not cut it. What about (3+ / 0-)
      Recommended by:
      LadyMiseryAli, drmah, Pandoras Box

      the suffering of the disabled child?  No amount of "care" is going to justify having to sit up all night with YOUR child and watch YOUR child suffer without end.

      •  that's also true, but... (0+ / 0-)

        ... it's outside the range of political/government policy, and in the realm of personal ethics.

        Yes I agree, ethically one shouldn't bring a child into the world who is going to suffer terribly.  There should be cultural pressure in favor of compassionate abortion in cases where there is a clear diagnosis that indicates that will be the outcome.

        But in order to make this work without coercion, the first step is a policy of 100% socialized coverage for people with disabilities.  

        By analogy: doctor-assisted suicide.

        Yes, patients should have a right to end their lives with peace and dignity when they reach a point where their pain and suffering are intractable.

        But first there need to be policies that provide appropriate pain management and other care to those who choose to live.

        Otherwise, suicide becomes the convenient method by which an increasingly callous culture decides to dispose of its "inconvenient byproducts."  In other words, "Sorry, we aren't going to prescribe any more morphine for the last six months of your rather expensive medical care; it's all about the bottom line and you're too expensive.  However, rather than just lie there in agony, you can always sign this form and the doctor will give you a final overdose."

        That would be an abomination.

        And the parallel abomination would be if disability care was not provided, so as to coerce parents into having compassionate abortions: compassionate only by contrast to their disabled kids being dumped by society.  

        Once we start down that road there will be "bracket creep."  The goalposts will slowly shift on financial grounds, such that all of these diagnoses become grounds for pressure to abort a fetus or end a living person's life.  

        This is why socialized care MUST be in the mix FIRST:  to make the "choice" a real choice rather than a coerced "choice".  

        "Minus two votes for the Democrat" equals "plus one vote for the Republican." Arithmetic doesn't care about your feelings.

        by G2geek on Sat Aug 18, 2012 at 06:59:23 PM PDT

        [ Parent ]

  •  I'd recommend reading Martha Beck's (4+ / 0-)
    Recommended by:
    absdoggy, cai, erush1345, jgilhousen

    stories about her son, Adam. I don't think she's fetishizing his Down Syndrome. I think she's honestly describing the unique perspective he has on things and how much it enriches her life to have him in it.

    Please visit: http://www.jkmediasource.org

    by Noisy Democrat on Fri Aug 17, 2012 at 12:57:27 PM PDT

    •  All cases are individual (4+ / 0-)

      and all decisions must be made individually. Please re-read the diarist's section on "Classism" - those who write positively about raising Down's Syndrome children are almost exclusively those who have the means to afford the extra medical expenses.

      If they don't have the means, don't damn them for not wanting to incur the expenses and the hardships.

      If it's
      Not your body,
      Then it's
      Not your choice
      And it's
      None of your damn business!

      by TheOtherMaven on Fri Aug 17, 2012 at 01:33:54 PM PDT

      [ Parent ]

      •  Excuse me? I mean, really, WTF? (0+ / 0-)

        I didn't damn anybody for anything. Didn't utter a peep against abortion, prenatal testing, or whatever it is you're defending. All I said was that if the diarist can't understand why anyone would think they had especially rewarding experiences from raising a child with Down Syndrome, he or she could read Martha Beck's books to get some insight into it. Sorry if my recommending that someone hear about someone's experience really, totally pissed you off.

        Please visit: http://www.jkmediasource.org

        by Noisy Democrat on Mon Aug 20, 2012 at 05:38:16 PM PDT

        [ Parent ]

    •  How very nice for her. I wonder how her other (1+ / 0-)
      Recommended by:
      Pandoras Box

      children feel about it?  I haven't read the book but, I wonder how her marriage fairs and if she is even married?  Who would marry a woman with the "baggage"?
      How is she dealing with the fact that she may very well age and require care for herself?  Who will take her  child and care for him?
      There are plenty of ways to enrich your life without having a disabled person to care for all your life.
      Raising a regular kid is just as enriching.

      •  Why the heck are you so down on someone (0+ / 0-)

        you know nothing about? My point was simply that the diarist couldn't understand how anyone would find anything rewarding in raising a child with the different perspectie that Down's Syndrome may provide, unless they were fetishizing the handicap. I said I thought Martha Beck's experiences would provide some insight into this. From the comments here, ou'd think I'd recommended that every woman be forced to carry a Down's Syndrome child to term.

        Please visit: http://www.jkmediasource.org

        by Noisy Democrat on Mon Aug 20, 2012 at 05:36:42 PM PDT

        [ Parent ]

  •  This is just disgusting (2+ / 0-)
    Recommended by:
    erush1345, jgilhousen

    My neice has Down's Syndrome, and to accuse me or my brother/sister - in - law of fetishizing a disability because we regard her as a blessing is apalling. No, my sister-in-law did not have her as a character builder. Moreover,  who are you to say that her life or the life of any child with Down's syndrome is not as rich and rewarding as yours or mine?

    Of course I would advocate for continued medical research into gene therapy or other treatments that could prevent Down's syndrome, Tay-Sachs, etc. No one wants their child to be born with Down's Syndrome.

    But to abort all fetuses that might be born with abnormal genes that would cause them to suffer - the blind, the deaf, epilepsy? - where do you draw the line. You would prevent Steven Hawking from being born? Really? Why not go ask him if he wishes he'd never been born? Why not ask my neice? I guess it would have been better if Beethoven, Lou Gehrig, and all the other people who were born blind, deaf, with MS, etc. had never been born.  YOU are the one being selfish, putting your aversion to suffering ahead of life itself.

    This is exactly what eugenics is based upon - the prevention of suffering, the improvement of mankind. Look at your arguments - according to you, poor people should abort their fetuses 100% of the time because it would be promoting the fetus over the rest of the family if the fetus were allowed to be born, and the child would have a poor quality of life. Eugenics is eugenics, no matter how noble the goal behind it.

    Liberalism is trust of the people tempered by prudence. Conservatism is distrust of the people tempered by fear. ~William E. Gladstone, 1866

    by absdoggy on Fri Aug 17, 2012 at 01:11:49 PM PDT

    •  The diarist didn't say all, she is in favor of (5+ / 0-)
      Recommended by:
      FG, melfunction, qofdisks, LadyMiseryAli, drmah

      choice, by the mother. Some will choose to give birth, some won't.

      Oh for crying out loud!

      by 4mygirls on Fri Aug 17, 2012 at 01:43:59 PM PDT

      [ Parent ]

      •  Choice - yes, but she did say all (1+ / 0-)
        Recommended by:
        erush1345

        The diary clearly places the value of a disabled person's life as being less than that of a non-disabled person. For example, in saying that disabled persons would choose not to be - for some this may be true, but no way near all.

        Or saying that the poor would rather be rich - no, actually, this is not necessarily the case. Some of the happiest people on earth choose to be poor, choose to sacrifice for others.

        Stephen Hawking is the perfect example - if his mother had made the choice to abort him based on the diarist's considerations, would that really have been a better choice?

        We all know the story of Beethoven - destitute mother with an STD, her firstborn died in childbirth, her second was mentally retarded and her third lame. If that mother had chosen to have an abortion - it was her right, okay.  But to take potential suffering and make it paramount in the decision goes too far, it goes to the realm of eugenics.

        Liberalism is trust of the people tempered by prudence. Conservatism is distrust of the people tempered by fear. ~William E. Gladstone, 1866

        by absdoggy on Fri Aug 17, 2012 at 01:59:10 PM PDT

        [ Parent ]

        •  I hear the existential screaming, (2+ / 0-)
          Recommended by:
          qofdisks, LadyMiseryAli

          "No, no, Not Non-Existence! Not Not-Being! It's Too Horrible To Contemplate!"

          Mind if I point out that you're being irrational to the point of hysteria?

          If it's
          Not your body,
          Then it's
          Not your choice
          And it's
          None of your damn business!

          by TheOtherMaven on Fri Aug 17, 2012 at 02:18:19 PM PDT

          [ Parent ]

          •  No, sadly, the only irrationality is discussion (2+ / 0-)
            Recommended by:
            erush1345, qofdisks

            It is irrational to have any discussion whatsoever about abortion, because this is what happens - name calling, one person insulting and denigrating another.

            I'm sorry you can't respect someone else's opinion and thoughtfully respond to it.  I have stated time and again that I respect a woman's right to choose, and to consider all factors involved.  I simply disagree that aborting due to the potential of a disability, to avoid potential suffering, should be paramount in that decision.  

            The diarist says "don't promote the continued existence of disabilities" - no one who makes the decision to go forward with a pregnancy after learning their fetus has a genetic disorder is doing this.  No one.  And I can come to no other logical conclusion than to interpret this sentence as advocating for the abortion of a fetus that does have a genetic disability - to continue the pregnancy to birth would be to promote the continued existence of that disability, would it not?

            Liberalism is trust of the people tempered by prudence. Conservatism is distrust of the people tempered by fear. ~William E. Gladstone, 1866

            by absdoggy on Fri Aug 17, 2012 at 02:43:15 PM PDT

            [ Parent ]

            •  You shouldn't drag in invalid arguments (2+ / 0-)
              Recommended by:
              nchristine, LadyMiseryAli

              if you don't want to get a negative or even hostile response.

              I've already referenced Hawking (below). As for Beethoven, have you any idea of the state of gynecology in 1770? It barely existed, and most of what was actually known and practiced was in the hands of midwives, not doctors. The options for avoiding pregnancy amounted to "Don't have sex" or "Drink a toxic herbal concoction and hope it works without killing you".  That's not much of a choice.

              I find it rather strange that someone who claims to "respect a woman's right to choose" is arguing so long, so loudly and so fervently AGAINST the right to choose when it offends the arguer's own principles. That kind of "respect" isn't worth much and is not any kind of real support.

              If it's
              Not your body,
              Then it's
              Not your choice
              And it's
              None of your damn business!

              by TheOtherMaven on Fri Aug 17, 2012 at 03:16:42 PM PDT

              [ Parent ]

              •  "invalid arguments", you prove my point (1+ / 0-)
                Recommended by:
                erush1345

                So any point of view that you don't agree with is an invalid argument, which allows you to be hostile.  And you deliberately lie about and distort others opinions.

                That being the case, bless your heart and have a nice day.

                Liberalism is trust of the people tempered by prudence. Conservatism is distrust of the people tempered by fear. ~William E. Gladstone, 1866

                by absdoggy on Fri Aug 17, 2012 at 04:48:20 PM PDT

                [ Parent ]

                •  Hawking and Beethoven WERE irrelevant (0+ / 0-)

                  and I spelled out exactly why.

                  If you think there are circumstances that should not be considered in respect to abortion - and you have explicitly said as much, more than once -  you do not fully support a woman's right to choose.

                  Can we at least agree on THIS:

                  (G-d forbid anyone pass any more crazy laws based on emotional arguments - we've already had way too much of that!)

                  If it's
                  Not your body,
                  Then it's
                  Not your choice
                  And it's
                  None of your damn business!

                  by TheOtherMaven on Fri Aug 17, 2012 at 05:22:01 PM PDT

                  [ Parent ]

    •  re (3+ / 0-)

      FYI, the diary is cross-posted, and the author will not see your comment here.

      ...not that I agree with your perspective that the author is advocating eugencis. For it to qualify as eugenics, you'd have to prevent the couple from getting pregnant again.

      Finally, I think that the line has to be drawn by the individual women carrying the pregnancy.

      Democratic Governors Association on: Mitt Romney's economic plan

      by distraught on Fri Aug 17, 2012 at 01:44:08 PM PDT

      [ Parent ]

    •  Hyperbole much? Distortion of argument much? (5+ / 0-)
      Recommended by:
      FG, qofdisks, Ahianne, LadyMiseryAli, Jahiegel

      Blind worship of "life at any costs, under any conditions" much?

      "Eugenics" has a bad name purely and exclusively because it was forced on people, without their consent and often without their knowledge. It is in no way the same thing as genetic counseling, nor with making an informed decision based on the results of such counseling.

      The diarist is not advocating the imposition of any particular choice on anyone, for any reason. They are advocating providing all the facts, allowing all the options, trusting people  to make their own choices, and NOT demonizing them for making the "wrong" choice.

      If you asked Stephen Hawking, I suspect he would reply that he would not have chosen to live in the corporeal prison he must deal with 24/7/365. Please also recall that he is a British subject and has had all the resources of the National Health Service to draw upon - do you really think he would have fared as well in Amercia? (misspelling quite intentional, I assure you).

      Beethoven was not born deaf, and no one knows why he developed deafness - nor is he the only composer who has ever dealt with that handicap. BIG straw man there.

      Only 10% of Amyotrophic Lateral Sclerosis ("Gehrig's disease") cases can be identified as having a genetic cause - the cause(s) of the other 90% remain unknown and therefore not predictable. Another BIG straw man.

      What exactly is so "noble" about suffering, and what is so "evil" about wanting not to inflict it on others?

      Seems to me that at least some of the screaming about the "sanctity of life" and the "selfishness" of choosing abortion comes from stark existential terror at the thought of Non-Existence - of "never having existed" - of Not-Being. I can understand that terror, but it does not give anyone the right to impose their own positions on anyone else - at any time, for any reason, and especially not for such irrational reasons.

      If it's
      Not your body,
      Then it's
      Not your choice
      And it's
      None of your damn business!

      by TheOtherMaven on Fri Aug 17, 2012 at 01:56:36 PM PDT

      [ Parent ]

      •  Yes, the diarist is advocating a position: (1+ / 0-)
        Recommended by:
        erush1345

        That a disabled person's life is worth less than another's, that suffering from a disability is bad.

        Hawking - I have read on his answers to these questions - of course he wants ALS gone.  But his  mother's choice was not whether he would choose to live in his body with ALS - it was whether he should live at all given that he had the ALS gene.  If she had made such a decision, that is her right. But the diarist clearly states that she would NOT have brought Hawking into the world if it were her child on the basis of the fact that he would have a disability.  This debases people with disabilities.

        I quote from another response at the site:

        "Personally, while I wouldn't wish some of the things I've experienced as a disabled person, even aside from results of ableism, on anybody, I also feel on some level very threatened by the arguments advanced in support of selective abortions. This is because I live in a world where people think that it would be better if no one looked like, sounded like, thought like or lived like me ever again, and not because of what I've gone through, but because it makes them uncomfortable to see and be around someone who's different. I've been called a "life sentence" to my parents, and one of these parents has said directly to my face that it was unfair for my brother to have to grow up with someone like me. In the state I currently live in, my existence is actionable in a court of law, and a judge and jury can decide that it was negligent for a doctor to allow someone like me to be born. I'm not okay with these things, or any of the beliefs about disability or "quality of life" that allow for and lay the groundwork for them, and I especially don't like it being assumed that I do support them, or at least see the reason in them enough not to question them.

        This is not inconsistent with the feelings of many in the disability rights movement. In the article, you assume that disabled people would prefer to not be disabled. This is not nearly universally the case. I and many other disabled people believe, and many of us have explained at length, about how disability is not a detachable feature from us, how we can't even conceive of ourselves as able-bodied and/or neurotypical people, no more than you or other able-bodied and neurotypical people can imagine living as a disabled person. Being a supporter of the disability rights movement means respecting and valuing disability as a permanent and unavoidable part of our identity rather than trying to wish our identity, individual and collective, away.

        Also, I think it's disingenuous to talk about compassion for the potential disabled person in this context. First of all, the end result of selective abortion is that there will be no disabled person to be compassionate to. Furthermore, if one's of a mind to attribute desires to a potential person, most people would rather exist than not exist, and so "compassion" that involves preventing their existence is at best paternalistic and based on projection by non-disabled people. Meanwhile, if the potential person is not an entity worth considering at all, then compassion is a moot point, and it's better just to recognize that the discussion is really about the wishes and interests of the (most likely) non-disabled people involved and not pretend otherwise.

        I can't in good faith say that selective abortion is morally the same as, nor leads to, "mercy killings" of disabled people by parents and caregivers, but at the same time, the logic of "compassion" that justifies both is more or less the same: that it's better not to live at all than to live with a disability. As long as that belief is anywhere near as prevalent as it is, I know where I stand in this society, and that it's nowhere good. The compassion I - we - need is one that drives people to understand our point of view and work with us to make a better and safer world for us, not to assume our point of view matches theirs without asking and seek to prevent us accordingly."

        Liberalism is trust of the people tempered by prudence. Conservatism is distrust of the people tempered by fear. ~William E. Gladstone, 1866

        by absdoggy on Fri Aug 17, 2012 at 02:20:24 PM PDT

        [ Parent ]

        •  Let's get real here, especially about Hawking (4+ / 0-)

          1) He was born in 1942, long before genetic testing for an "ALS gene" was a realistic possibility.

          2) Only 10% of future ALS cases  can be detected by genetic testing even now.

          Ergo, because Hawking's condition could not possibly have been detected by genetic testing, he is irrelevant to the present argument (which has to do with now and in the future).

          The rest of it is a purely emotional argument that can only be answered with, "I don't feel the same way, so I can't agree". (And G-d forbid anyone pass any more crazy laws based on emotional arguments - we've already had way too much of that!)

          If it's
          Not your body,
          Then it's
          Not your choice
          And it's
          None of your damn business!

          by TheOtherMaven on Fri Aug 17, 2012 at 02:57:10 PM PDT

          [ Parent ]

        •  It is not a question of worthiness to live. YOu (3+ / 0-)

          miss the point.  It is a question of a life worth living. It is a question of compromising the quality of life in behalf of the not yet born.  
           We will all suffer disability, suffering and pain in living this life regardless if we are fortunate.  
          Unfortunately, the argument for the avoidance of suffering will not persuade Christians because suffering is considered noble and necessary to become close to God.

    •  jesus christ, the diarist didn't say (0+ / 0-)

      abort all fetuses with problems

      nice distortion

  •  Interesting. The article you quote certainly (2+ / 0-)
    Recommended by:
    Wee Mama, ZenTrainer

    has flaws.  I am 100% convinced that a woman has the right to determine what happens inside her own body.

    I agree that terminating a pregnancy can be a compassionate choice -- not just for women whose fetuses have known birth defects or genetic disorders, but for women who simply do not want to be pregnant, at that time or ever.  Or do not want to be a parent, at that time or ever.  Or who do not have the resources to raise a child -- any child is expensive, ridiculously so.

    But, I think it's a little disingenuous to compare a life with Down's Syndrome to a life with no cognition, in constant pain.  They're not at all equivalent.  And from what I've read about people with Down's Syndrome, it's not just that they teach parents and caregivers special lessons, but that they themselves experience love and joy, as well as obstacles and difficulties.  

    And frankly, I'm not sure people can separate the worth and dignity of people with disabilities from questions of aborting fetuses with those same disabilities.  As people with disabilities strive to make people stop pitying, insisting that their lives are worth living, that's going to have an impact on how people feel about the potential lives of disabled fetuses.  It just will.

    You say that a potential parent has a moral duty to prevent suffering.  I think this is a too broad a statement: all life involves suffering.  Every life.  Even if you don't take the Buddhist view that existence is suffering, full stop, every life will involve pain.  And a lot of it is not going to show up in a prenatal test; a lot of it happens later.  Many serious disabilities are the result of accident, disease, etc., later in life.

    Anyway, I thought I would let you know the flaws I see in your own essay.  But it was courageous of you to write it.

    © cai Visit 350.org to join the fight against global warming.

    by cai on Fri Aug 17, 2012 at 01:28:08 PM PDT

  •  One wonders what it is that would prevent the (3+ / 0-)
    Recommended by:
    absdoggy, erush1345, jgilhousen

    State from abrogating your arguments to its own interests at some point in human development, including pre-natal, irrespective of the mother's wishes.

    •  It's called HR 212 and Ryan sponsored it with (7+ / 0-)

      Romney supporting the idea. It's part of what we get if those two get elected.

      In that world, where that passes and becomes all, all of this is academic because it no longer matters what may be learned by a second trimester test, as no abortion is ever an option at any stage, and a woman's only chance of avoiding a pregnancy will be a fully celibate life, but there is NO help or support for the mother of a challenged child once born, and at least an even chance she will end up raising it alone, on what a woman may earn in the absence of Lily Ledbetter laws. And some children will be born motherless or entirely orphaned, because the life of the mother is subordinate to the birth of the child, challenged or not.  

      •  Nonresponsive. It's not a candidate issue. n/t (0+ / 0-)
        •  Popovers (0+ / 0-)

          Popovers

          1 cup flour
          1/2 teaspoon salt
          3 eggs
          2 Tablespoons butter or margarine, melted
          1 cup milk

          Combine flour and salt in bowl. Make a well in center of flour and add eggs, butter or margarine, and milk. Beat until smooth. Fill well greased five ounce custard cups or muffin pans half full. Bake in hot oven (400ºF) 35 to 40 minutes or until brown and crisp. Makes 8 popovers.

          If it's
          Not your body,
          Then it's
          Not your choice
          And it's
          None of your damn business!

          by TheOtherMaven on Fri Aug 17, 2012 at 05:16:36 PM PDT

          [ Parent ]

    •  Government R Us (1+ / 0-)
      Recommended by:
      qofdisks

      In THIS country "the State" is US, and its actions are, at least theoretically, what we agree to. It is not - yet - some totally external monster imposed on people without their consent. (It's heading that way, which is something we should be concerned about.)

      If it's
      Not your body,
      Then it's
      Not your choice
      And it's
      None of your damn business!

      by TheOtherMaven on Fri Aug 17, 2012 at 02:36:17 PM PDT

      [ Parent ]

  •  Very well done diary. (4+ / 0-)

    I have been blessed with healthy children. We know some parents of disabled children.  Based on comments from my spouse, I'm really not sure what decision we would have made given a prenatal test with any disabling results. Many marriages don't weather the hardships of caring for handicapped children. Is it fair for children already in the family to put their foundation at risk? Raising a disabled child is a blessing and rewarding, as long as that is the decision the parents willingly agree to.

    Oh for crying out loud!

    by 4mygirls on Fri Aug 17, 2012 at 01:51:25 PM PDT

  •  Here's what I think: (3+ / 0-)

    1) Provide the facts. ALL the facts. JUST the facts. No withholding information, no biased information, no wishful thinking.

    2) Let each woman make her own decision based on those facts and on her knowledge of her own situation.

    3) Regardless of the decision, no consequences - no blaming, no shaming, no second-guessing, no "But if".

    If it's
    Not your body,
    Then it's
    Not your choice
    And it's
    None of your damn business!

    by TheOtherMaven on Fri Aug 17, 2012 at 03:50:44 PM PDT

  •  Agree with this diary! (4+ / 0-)

    I have decades of experience with my own special child who is multiply disabled and whom I care for at home.

    I support all the points of the diarist and want to add that the stress of caring for a dependent special child takes an average of 13 years off the normal lifespan of the child's caregiver (i.e. mom).

    The stress of such caregiving erodes the protective telomeres on maternal DNA and leaves the mother prematurely vulnerable to lethal diseases.

    I now have an incurable form cancer (which is NOT in my family, and I which developed it at a relatively young age).  

    I am greatly concerned about what will become of my special child when I am no longer alive.  

  •  My physical therapist just killed herself. (4+ / 0-)

    She was beautiful and strong and precious to the community for the healing she facilitated to so many people in this rural community.
    She had a profoundly disabled daughter less cognizant than the family cat, non-ambulatory,  with a feeding tube, with multiple medical conditions and surgeries.  The child was not expected to live past the age of 1 year.  The "child" was 26 years old when her mother took her own life.
    The beautiful strong woman was married but, her husband had disintegrated years before into alcoholism.  She could never choose to have another child because the one child was more than she could endure.
    The community still speculates as to what became of the child after that...

  •  Any species that does not cull degenerates. (2+ / 0-)
    Recommended by:
    LadyMiseryAli, Pandoras Box

    Humanity has evolved to the point where, most of the time, that moral culling can take place before the birth of our offspring.  If isn't a matter of worth, it is a matter of fact.  Human beings are not above natural laws.
    For those children chosen by their mothers to be born, our social structure should be designed and prepared to take care of the needs of ALL the people whatever their condition at all stages of life.
    If we were all taking care of each other properly, there would not be an employment problem.
    The conscious choosing and planning and controlling of reproduction by any means are moral.

    I walked outside last night in the rain.  There were hundreds of baby 1/2 inch toads so cute hopping about in my desert garden.  I wondered about "MY" two large established toads the size of salad plates that come out to visit each monsoon season.  This was an usually wet summer and I have never seen so many baby toads.  If they were all to survive, I would have to kill (cull) them myself.  Fortunately, every other creature in the garden will dine grandly on almost all of the baby toads.  Only a handful will survive to reproduce one of these wet years.  How I love the beautiful toads.

  •  Nicely written. (3+ / 0-)
    Recommended by:
    drmah, qofdisks, Pandoras Box

    I have a cousin who was born with Downs Syndrome. For the first year or two of his life, his mother denied his condition. She wasn't the sharpest tool in the shed, but at the same time I think she was in a deep state of denial. She and her husband never got him into any programs that would help him become an independent child and eventually, adult. In fact, they refused to work and would spend my cousin's disability payments(I think that was what it was because he was kind of a ward of the state by then) on the rent and drugs. They had another child, who was born without any disabilities, and she was pretty much neglected most of her life. Right now, my aunt has fallen ill with brain cancer or something of that nature. I fear that my cousin will be sent to some group home should his mother not make it, because his father is not fit to take care of him by himself.

    My aunt and uncle shouldn't have had him. That's an awful thing to say, but it's the truth. He wasn't properly cared for his whole life and because of that, he can never be an independent adult.  

  •  Brave Diary I wish we could have more of this (2+ / 0-)
    Recommended by:
    LadyMiseryAli, Pandoras Box

    on KOS.  This goes beyond the standard shallow party line.

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