Blessed be the Fruit, Offred
May 26th, 2008 by PavelContinuing growth in the field of eugenics is raising some interesting moral questions pertaining to one’s legal human rights. To illustrate this point, I dug up this ancient news relic from 2002, wherein a deaf lesbian couple effectively chose to have a “deaf baby”. Obviously lacking in some of the necessary plumbing, these women found little help from sperm banks that screen out disabilities from their donor pool. Turning to a friend who had 5 (five!) generations of deaf children due to some genetic anomaly, they magically transformed his manbutter into two (otherwise?) healthy deaf children for themselves.
Many people view this story as a tragedy – in their eyes, parenting is a responsibility that involves making one’s child physically and emotionally prepared for a life of independence. Condemning one’s offspring to a life of hardship (deafness is undeniably, in absolute terms, a more difficult existence than being of hearing) by removing a natural faculty may very well seem unforgivable. This accusation is not necessarily a fair one, as the sperm used in this case would never have made a baby capable of hearing – the mothers didn’t build a broken baby, they just used a different set of blueprints. The couple counters that this makes their child a member of their world, and more personally and emotionally connected to the experiences of its parents. They also said they were part of a generation that viewed deafness not as a disability but as a cultural identity, which honestly sounds more like post-modern university babble than cognizant parenting.
Legally, nothing could or should be done to these women. The law has been used to systemically oppress and control women’s bodies since time immemorial, and their autonomy cannot be paternalistically usurped for the rights of a hypothetical and non-existent child. Advances in medicine may have us one day re-examine when personhood begins, but restricting a woman’s right to do whatever they please with their fetus is a dangerous slippery slope.
More interestingly, this raises the question of what “responsible” fertilization could one day entail. The couple compares their decision to choosing a black or gay child, and the analogy is a reasonable one. Blacks and homosexuals have effectively created different representations of their own cultures (however heterogeneous they may be), and choosing a child that fits these definitions may be desired. Resultant children would reside within a social context that may very well be prejudiced against their minority status – are the parents irresponsible for “choosing” these respective interpersonal conflicts for their offspring? Should they have instead chosen a blond, blue-eyed bambi with sparkling teeth and a perfect complexion? Should they have a choice?
May 26th, 2008 at 1:23 pm
The thing is, we’ve been tacitly accepting eugenic screening for decades now. Once we determined how to perform non-invasive screening for a number of genetic defects (and I use the word defect with intentionality here - I have no truck with pomo bullshit, as you say), we quickly drew a line in the sand and said that Down’s Syndrome is perfectly legitimate grounds for abortion. And I fully accept that line of thinking.
Living as we do in a welfare state, either society has to have some role in determining valid grounds for termination, or else the parents need to compensate everyone else for the burden that their child represents. It’s a callous way of looking at things, but there is a social contract associated with our way of life. Secondly, I would call it selfish and irresponsible to willingly inflict deafness on your future child, simply because you feel more comfortable with having a deaf child, or because you feel it’s an important part of carrying on the lineage of “your unique experience.” This is a clear case in which the parent’s knowledgeable decision is in clear infringement of the future child’s welfare.
I’d even say my opposition to this is perfectly in keeping with my current line on abortion, since I remain convinced that in some cases no life is inherently “better” than a painful, unloved, desperate one. I’m fully willing to accept the negative default when it comes to childbirth. The world has no shortage of humanity. Reproduction is not a miracle.
May 26th, 2008 at 1:28 pm
I think parentes should have the right not to have children that could have genetic disorders.
Not other way around though.
for example if there is a deaf or blind couple who wants to have a child but its very likely their child would be deaf/blind too they shouldnt be stopped from having children.
However like in this case for parents to intentionally chose for their children to be deaf
i don’t like that at all.
May 26th, 2008 at 1:38 pm
You’re outlining two separate arguments that need to be addressed.
First off, in many ways, any child is a burden on the system, and no two children are alike. Us filtering out downs was not a morally or ethically examined decision, it was just something the parents wanted for themselves and due to them as free thinking adults. In the future, these screenings will only improve in terms of efficacy and specificity… are we going to refuse to allow ANY “defects” that might drain the social coffer? Who gets to decide which ones are worth keeping? Which diseases and afflictions add to the human experience and which ones detract from it, and do you really want the state to be arbiters over this decision?
In Western society, individual autonomy has deemed to be more important than societies “role” in our personal lives. The tiny bit of natural law we agree to that decides things like “living” and the right to “make babies” and “raise our children” are inalienable means we have NO greater responsibility to our society. To 99% of people, being allowed to have a baby is more meaningful than their social rights.
Secondly, you may very well be correct in saying that it is selfish or irresponsible to choose a deaf baby, I’m not entirely sure I disagree. There is some credence to the idea that you really only need love and patience to raise a kid (why two gay guys can still happily raise a female child, a single mother can raise two sons, different races can adopt each other, etc) but in a way these mothers aren’t really “harming” anything. Again, they haven’t altered any DNA, they’ve simply popped out someone slightly lower on the “easy life” gradient. The women have a right to choose whichever sperm they see fit… if one of them had sex with the deaf friend and popped out the baby “naturally” we’d have no way to stop them, right?
As a side note, be careful saying there’s a “clear infringement” on a future child’s rights. Last time I checked things that don’t exist don’t have rights =P
May 26th, 2008 at 1:43 pm
Thanks for the post, Jernej, all the way from Slovenia.
Should parents be allowed to choose children that would be “weird” in other ways? How about a really stupid child? Or a really stupid but REALLY happy child? A gay child? All of these lives might suck, depending on where you live.
May 26th, 2008 at 1:58 pm
I’m not quite sure I understand how every child is a burden on society. If this were the case, we would adopt a negative growth policy - by contrast, however, policy endorses immigration because it’s helped to fuel the country’s economic growth as birth rates in the West decline.
I fully agree that people’s individual rights trump those of “society,” but I also think people need to take responsibility for their actions. This is why seatbelts and bike helmets are mandatory - if you don’t wear them, the rest of us need to foot the bill when you fuck yourself up.
The designer baby argument is an age-old one, and it’s going to be interesting in the (near?!) future when policy actually needs to confront it - truth is stranger than fiction. I’m obviously uneasy about giving the government control over that, especially given the state of North American politics at the moment.
I think that clarity is important here, though. From a rational, genetic point of view, deafness, Down’s, haemophilia, octobabies, etc… are defects. I’m prepared to accept that many parents are more charitable than I, and are willing to love such a baby should they conceive it. But I take serious issue with choosing defectiveness out of personal convenience or political activism (basically, what Jernej said) to highlight their plight.
Good catch on the infringement thing…I’ll choose my words more carefully next time.
May 26th, 2008 at 2:23 pm
Genetic point of views are so far disconnected from reality at this point that they’re nearly irrelevant - it doesn’t matter how well we could survive in absolute terms, just how well we’d function in modern society/conditions. Deafness, while an attack on one of our basic senses, does not make someone incapable of functioning in society. It is definitely harder to get by, but that struggle may very well attest to the “culture” that the deaf mothers are speaking about.
There are ways in which black parents can be seen to understand some of the inherent difficulties that comprise living as a black youth in our society - their shared connection and identity brings them closer through trials and tribulations. To these two women, a non-deaf baby will not “understand” their lives, identities or experiences, and will not be able to connect with them the level they see fit. I guess the question is whether the life is so miserable that we have to interfere with the parents’ rights for the sake of human decency, and there seem to be some examples where we would.
Governments have stopped Downs patients from having litters in the past…. If this story was about two quadraplegics hoping their child shared their fate, we’d probably be having a much more heated discussion right now.
May 26th, 2008 at 9:27 pm
Wow.. this got going in a hurry. I completely agree with Pavel that “nothing… should be done to these women.” There should never be a power able to stop two people (or even one person) from reproducing in whatever way they see fit (although I’m sort of tempted to say it’s okay if this only applies once.. i.e. I don’t think I have a problem with China’s one child law). While a deaf (or downs, or autistic, whatever) child may impose a burden on society, that’s the cost to pay for personal freedoms I think. People are allowed to make plenty of choices that impose a cost on society (smoking, eating fast food…), and while some people certainly argue that this is a violation of our social contract, I have huge reservations about banning these sorts of activities.
Despite this, my initial reaction to intentionally having a deaf child was one of disgust, and I felt that it was a highly unjust decision. While I probably will always feel this way, I can’t help but think that a more relativistic perspective could be useful. As far as I know (not sure about Jernej), everyone involved in this discussion is healthy and ablebodied, and while it would certainly be absolutely devastating to any of us to go deaf, I can’t help but think that a life never knowing sound wouldn’t be nearly as bad. Ignorance really can be bliss I feel.
Finally, I just want to say I am very happy that terming things such as deafness, downsyndrome, parapalegia, etc, as genetic defects has been accepted. They certainly are.
May 26th, 2008 at 10:06 pm
First, good call on the reference to Handmaid’s Tale. I’m assuming that’s what it is, anyway. Have you read Oryx and Crake?
I’m pretty appalled by the decision to deliberately have a deaf child. No, being born deaf wouldn’t be nearly as bad a losing hearing later on in life, but it still is cutting out a significant chunk of potential life experience. Inasmuch as you can’t infringe on the rights of someone that doesn’t exist, when does it become an infringement? Or does it ever? It’s one thing to say “you could be aborting a future Beethoven” (or Hitler), but quite another to CHOOSE to have a deaf child.
Then again, the whole idea of having a child in the first place is going to be an infringement on that child’s right not to be born at all, so maybe the point is moot.
The designer baby debate is something that I have a great deal of difficulty wrapping my mind around. Not everything is a slippery slope, and I don’t think that this automatically is one, but … yeah, I’ve read too much dystopian fiction to let it slide totally. No pun intended, there.
The state should stay out of people’s bedrooms, of course. But - there’s always a but - isn’t there something incredibly fucked up about the fact that you need to have a license to drive, to fish, and (maybe?) to own pets, but you don’t even need to take a class if you’re going to have a kid?
May 26th, 2008 at 10:57 pm
It’s not illegal to drink or smoke when you’re pregnant, but at the same time its universally recognized as a repugnant practice. A baby with FAS or another inborn chemical addiction may still be able to lead a rich life despite their syndrome, but considering we condemn parents who do it unintentionally, how would you react to an alcoholic couple who drank during their pregnancy “so that their child could better relate to them?” It’s different, but not that far off.
Re-reading my posts, the social contract bits come off sounding seriously nanny-state, which was not really my intention. The point of contention in my mind is solely the conscious choice involved, and that’s where any burden of responsibility comes into play.
And Christopher, as far as I know, there is no right not to be born, and considering the debate still rages over our conscious choice to die, I don’t think that sort of technicality weighs against your argument in the slightest. You could certainly stage it as a moral debate, but actually carrying out any kind of law on the matter would be truly bizarre.
May 27th, 2008 at 12:51 am
Choosing deaf sperm from a deaf parent to have a kid with is not the same as drinking booze and hoping he has FAS instead of one of a thousand other problems.
May 27th, 2008 at 1:11 am
The parents are extremely selfish. I don’t think it is right to intentionally deprive a child of a sense. I feel bad for the child, who has a chance of discovering his/her parents’ choice. I would probably disown my family if I found out they ensured I was born with a disability. By the way, deafness is a disability.
That said, I don’t believe any legal action should be taken against the parents. Partly because I’m unsure how a law would be constructed without creating a huge mess. The other reason is that religious nut jobs disable their children, so it’s only fair that deaf nut jobs can do the same.
amirite?
May 27th, 2008 at 5:03 am
If one accepts that eugenics is acceptable, then building a moral case against purposefully having a deaf child is near impossible, unless your argument boils down to ‘I am right’.
Personally I think eugenics is a slippery slope.
May 27th, 2008 at 5:35 am
I think it’s fairly obvious from… well, every reply, that (most) of us, at least in the current case, make a very important distinction between the rights/responsibilities of the individual (couple, whatnot) vs. the rights/responsibilities of the state.
Now that I’ve stated the blindingly obvious, one of the more interesting parts of this beyond the “well that sucks but they shouldn’t be prosecuted” angle is the fun of really taking a look at parental responsibility: when do they kick in, what do they amount to? When do individual rights kick in for a child?
I’m reminded of the med-school mantra Primum Nil Nocere - “First, do no harm.” As is the case with most of our fun human-condition stuff, it’s woefully illogical, but the distinctions between actor and bystander, and active and passive harm, etc. really is the core of our moral fiber.
Just thinking about the fact that there is, at least when looking viewing the world through these damned humanity-tinted glasses, a very significant difference between choosing to have a deaf child, and choosing NOT to ’save’ the hearing of a child who is unintentionally going to be born deaf… well I think that pretty much guarantees this ain’t gon’ be resolved before we find ourselves obliterated and some future alien species starts stashing our bones in a museum and making horror movies about us coming back to life and terrorizing innocent cities. Worse yet is that we’ll probably never be able to satisfactorily place this sort of thing in any of the requisite categories.
Also, while I think that the choice they made was indeed selfish, when was the last time a couple had a child with a purely altruistic intent, focused entirely on the unborn child itself? People have kids because they want kids. That doesn’t necessarily make it less despicable, but the whole idea of conception with the interests of the unconceived in mind is sorta strange.
So, to sum: You know who else was seriously interested in eugenics? Hitler. Therefore, eugenics is wrong.
May 27th, 2008 at 4:18 pm
I bet Hitler also liked Ice Cream. But that’s neither here, nor there.
May 27th, 2008 at 4:37 pm
Hold the phone - Hitler liked ice cream?!
May 27th, 2008 at 6:53 pm
This sort of brings up interesting comparisons to Rawls’ Veil of Ignorance. Anyone think their position changes if the one who is contemplating has been deaf all his/her life? Probably more clearly put - do deaf people see being deaf as a disability? I tend to think not, but I’m no expert.
May 27th, 2008 at 8:36 pm
Deafness is a disability by definition. They can label it whatever they want, but it is most definitely a disability.
amirite?
May 27th, 2008 at 11:33 pm
It’s well recorded that precisely 100% of Hitler’s opinions and actions were unambiguously evil. This includes writing, receiving military distinctions, moustaches, being involved in politics, and being German. Thankfully, as far as I can tell, that means I’m only about two-thirds to three-fourths evil.
May 27th, 2008 at 11:48 pm
I keep telling you to shave off the moustache…
May 28th, 2008 at 4:11 am
A true American would have used “mustaches”
….
are you supporting terrorists again?
amirite?