Friday, August 22, 2014

Is it Immoral to have a Baby with Downs Syndrome?

This is the question that is going around the internet thanks to Richard Dawkins' latest twitstorm:

http://www.independent.co.uk/news/people/richard-dawkins-on-babies-with-down-syndrome-abort-it-and-try-again-it-would-be-immoral-to-bring-it-into-the-world-9681549.html

Once again his flippant responses on Twitter have gotten an outsized amount of attention.  His claim: it's immoral to bring a Down Syndrome child into the world, so abort it and try again.  I agree with him (though I still disagree about the wisdom of discussing morality on twitter)

But... I'd like to use it as an example of how his earlier twitstorm over quantification of moral wrongness should be handled.  Is it more wrong to abort because of a genetic defect than for another reason?  In my opinion it's never wrong for any reason, (though India is now feeling the effects of the higher numbers of aborted female fetuses than male fetuses -- making it stupid rather than wrong)

Down Syndrome, a.k.a Trisomy 21, has been declining since abortion was legalized.  An extra copy of all or part of chromosome 21, causes all kinds of havoc in the affected body, including the brain.  It is more common when the parents are over 30, and since more parents delay childbearing, the decline of the condition indicates quite a few of them are choosing abortion.

So let's establish our sliding scale of moral rightness or wrongness:

One one side:  Abortion ewww  or My Down Syndrome child is a blessing and I love him/her

On the other side:  Down Syndrome children suffer so why bring them into the world? or I can't deal with a disabled child so I'd abort to prevent having a child that I would have to give up for adoption or would be a terrible failure as a parent

Let's eliminate "Abortion ewwww" because it's not rational.  Abortions don't cause suffering to the fetus, and the stain of original sin from Eve means they are not innocent.  Mere repugnance, which is in my opinion the true root of anti-abortion sentiment, is not a basis for a rational judgment.

Let's also eliminate "I can't deal with a disabled child" because that person shouldn't have a child at all.  In essence, an infant is disabled.  When they're first born all they can do is cry and shit and sometimes they have to be taught to eat.  (Okay, yes they can also pee and breathe...)  If someone can't deal with a disabled child they can't deal with a healthy child in infancy and they can't deal with that healthy child after it breaks its neck on the playground and becomes a quadraplegic.  That person should not be a parent for any reason whatsoever anyway.   At the very least they should do some volunteer work to see if they can rise to the occasion before jumping into it.

That leaves the question of whether the suffering the Down Syndrome child experiences is so extreme that fetal euthanasia is the more humane choice even for people who don't like abortion, or whether the child has a sufficiently rewarding life for it to be worth living.

There are other genetic diseases that can be diagnosed in utero, so the morality of abortion in those cases could be determined based on the same questions.

First, the question of suffering in the abortion itself:  does a fetus have a right not to suffer?   Since they can't really "suffer", the point is moot.  Abortion does not cause suffering except to the woman who may have some physical side-effects.... but these side effects are negligible compared to the side effects of pregnancy so that's also moot.

To what extent does the Down Syndrome person, their parents, their family and community suffer?  Are they a drag on those around them?

Besides the obvious facial features and intellectual disability, they do suffer medically.  Their organization's FAQs downplay these, as if the ability to treat heart conditions, leukemia and breathing problems obviates the question of life expectancy, but what quality of life is that?  Assuming they survive their multiple hospitalizations and have parents who are willing and able to play nurse at home, they can now live a normal lifespan.

This means that they will outlive their parents, who play a huge role in enabling them to have a somewhat normal life.  So ... the great news is that instead of suffering young and dying young, they now suffer young and die old.  In the meantime, they can sometimes experience joy of a sort, but who takes care of them after their parents die?   If the parents' funds haven't been sapped by the child's needs, there may be a trust fund ... that other siblings can kiss goodbye.  Or society cares for them.  Even if they can support themselves financially by working a menial job (as most who work do), they will still need help with life skills.

The DS organization has a series called "Great Story of the Week."  Most of the "great" stories are written by parents, and of course the parents are sure they've done the right thing by having that child.  This is classic cognitive dissonance -- I have invested a helluva lot into this child so it can't have been a mistake!   The organization itself has cognitive dissonance, or else it would also have a series called "Horrific story of the week."

There is a meme amongst parents of disabled children:  that the child brings them so much joy.  *barf*   This is downright selfish.  This gives the child a job in life beyond just learning how to tie his shoes.  He has to make his parents happy, too!  He's a hero!  With a helluva burden!  Here's a snippet of one "great" story:
I was walking across the yard today with Seth.  We were strolling more than walking as he had wrapped his arm around my waist, and was looking at me as if to say "this is nice."  I asked Seth, "Did you have a good day?"  I know he can't answer me with words.  So much of what Seth and I say to each other does not happen verbally.  We have a connection that transcends speech.  
I have this same kind of relationship with my dog.  Where is the humanity in this exchange, not to mention the morality?  You can believe your mute kid is "saying" anything to you.  It reminds me of Teri Schiavo's desperate mother imagining that the random movements of her brain-dead daughter's eyes actually meant something.  I don't have anything against people with Down syndrome - they do the best they can, but this kind of treacle does not help their cause.

Even if this mom is right about what her kid is feeling, her boastful final statement proves that the relationship is self-serving:
I owe so much to this child.  I am often told how lucky Seth is to have us.  I always reply with something like "We're the lucky ones."  ... Life is much more beautiful when I slow down and look at it with Seth.  I am so grateful that Seth has taught me to walk slowly.
Walking a chihuahua will do that for you too.  Why is this woman praising herself or her kid?  She only values walking slowly because she doesn't have to.  At one point she says her son walks slowly "probably because of his physical limitations."   She can rush through the grocery aisles at the last minute to get ready for a party if she has to.  Seth can't.  Seth will probably never have that choice, even if he develops the intellectual capacity to plan a party.

"Seth" can't tell us what he'd like in life.  Would he like to walk faster and not have to hold onto his mom for balance?   I bet he would.  Would he like to have a career in the future in something more financially rewarding than menial labor (assuming he can even do that).  Probably.  If he understands the concept.

Imagine "Seth" at age 50, still unable to walk normally, but now with arthritis from joints moving the wrong way, and no mummy to hold onto.   He has a very tiny 401k from his job sweeping the supermarket floor.  He tries to be the smiling happy retard he was as a child, but he is in pain and he's not in the mood for the happy face.  Making other people happy gets old after awhile.

I have known adults who developed debilitating physical and mental (which are really physical but I digress...)  limitations in adulthood.  Having known both conditions, they don't like their new circumstances one little bit.  They will hang onto normalcy with their fingertips, but not because they're heroes.  They do normal things because they want to be normal!   If they complete a triathlon by having a family member push them in a wheelchair the whole way (it recently happened in Indiana) are they doing it to teach us a lesson in perseverance?  No!  They just don't want to give up the trappings of a normal life.  Who would?

Suffering in others should be part of our moral equation, too.  What if there is already a disabled child in the family?  What if there's a disabled parent?  What if both parents have to work to sustain the family and they won't have time to give the child extra help learning?  Not to mention taking time off if the kid develops leukemia or needs open-heart surgery.  What about siblings?  The disabled child(ren) rob them of their parents' attention.  You never hear about these kids resenting their circumstances -- naturally they love their siblings -- but it's undeniable that they are neglected.

If we ever get to the point of allowing assisted self-euthanasia (a.k.a. suicide), it will probably still be illegal to help someone who lacks the intellectual capacity to understand it.  The average IQ of a person with Down syndrome is 50 (average for normal people is 100).  The definition of mentally disabled is an IQ of 70 or lower.  You can teach sign language to an ape, but apparently "Seth" can't learn it.  Chimps are smarter than kindergartners, but is Seth?  Could he be trusted to make a life-or-death decision for himself when his body breaks down at 50 or 60?  If he's below the average for Down syndrome definitely not.  Who decides that?  They are probably just as likely as anyone else to suffer from the Dunning-Kruger effect.  They will think they're more competent than they are.

On the other side, adults with Down syndrome can be happy.  According to the Down Syndrome organization, they can also develop depression.  Just like anyone else, you can't predict who will be afflicted but for them it's just one more burden in a life that's already difficult.

So the gray area gets a bit grayer -- does one abort a fetus that will never be smarter than a chimp but let one with a lesser disorder come to term?   The amount of DNA damage can now be determined via amniocentesis.  If you can tell whether you're carrying a Seth or a high-functioning Chris Burke where would you draw the line?

This is why Dawkins has been getting crap from the Twitterverse.  Some people with Down Syndrome can manage relatively normal intellectual and emotional lives.  These above-average examples are used to shame people who envision a less bright future for their fetus.

Just once I would like to hear the parent of a disabled child say "I wish I had my child's disability."  They never do.  Deep down they know it's an unfair fact of life for their child and they wish it had been otherwise.

This brings us to another recent news item:  Robin Williams's self-euthanasia, a.k.a. suicide.  He was depressed, but he wasn't stupid.  His diagnosis of Parkinson's disease had to have been a huge blow, and he may have known people with the disease.  Most of us do.   After decades of a career based on quick-thinking did he see the disease take that away from him?  Did he fear losing that ability?   Did he decide to make a rational decision before dementia took even that away from him?  I was sad for him until I learned of his Parkinson's diagnosis.  He chose his time and place and he wanted to "leave them laughing."  Good for him!  If he didn't want people to see him as a cripple that was his choice.   If he didn't want to be a hero, that's okay.  Let Michael J Fox keep that title.   He may have responded to medication for depression and continued on with life for whatever years Parkinson's would give him, or he may not have.

Self-euthanasia is often considered a selfish act by those around the person who does it.  I lost one friend that way and I was very angry with her for a good while, but it was her life.  She didn't have to live it for the sake of other people if she didn't want to.  In another case, an elderly acquaintance (who was an atheist) took matters into her own hands when the pain of arthritis and osteoporosis became unbearable and untreatable.  She had all of her faculties, and made her choice, acting alone because our society is too backward to let her pick her time openly.

How often have we heard "When you have your health you have everything?"  Is the corollary that when you don't have your health you have nothing?  How can society send the message that health is important and then try to shame someone like Dawkins for advising termination of an unhealthy fetus?

My judgment on the continuum:  if you can prevent suffering, and especially if you can prevent suffering while the issues are simpler, then you should do it.  Robin Williams made his decision while he still had the mental and physical faculties to carry it out.  And in the case of fetal euthanasia, more suffering is prevented than created.

3 comments:

L.Long said...

Is abortion immoral?? The Downs Syndrome is superfluous.
This is an important question because one person's good reason is the pro-fetus group's bad reason (I refuse to call these dimwitted idiots PRO-LIFE). So the reason is of no value. For me, I do not have a uterus so really my opinion is BS. But if I consider abortion as being a difficult but MORAL decision then if it is determined that it has X defect and I abort then it is moral FOR ME!!!! What you think is BS.
Now if YOU (royal you not Lady Atheist specifically) think abortion is immoral THEN DON'T GET ONE!!!! So you hypocritical Right wing religious rePUKEian aHoles who shut down clinics because you can afford private clinics for your abortions & you know who you are mrs Santor...., are going to hell for at least two reasons(I just wish there was a xtian hell for you).
As for Dawkins' comment, Ya? So what? who really cares? If you don't like what he tweets then don't tweet him!!! Simple!!

L.Long said...

Sorry did not read question properly. Again the question is more generalized to is it immoral to have an X type baby???
And the answer is easy...Is it your morality?? For me (again no uterus so use gain of salt) the answer is yes it is immoral IF it can be avoided. But if things happen than things happen and you make the best of that situation. But if some religious blow hard preaches to you and condemns you just ask him a simple question will they accept the baby as theirs? Yes? cool give it to them, NO? then piss off.
But essentially your morals are yours not mine and the other way around...illegal is a social construction.

LadyAtheist said...

Yep, exactly. The question is mainly moot because abortion is a valid moral choice anyway.

A defective fetus has no more or less "right to life" than a normal ones because it has no rights at all, nor should it. If someone is happy with their kid, well that's great for them. It doesn't mean that everyone should do it.