- Prenatal testing is changing who gets born and who doesn’t. This is just the beginning.
A Japanese bioethicist named Masahiro Morioka has done some interesting writing on this (one example). One of his arguments is what he calls "the fundamental sense of security," which is the inherent belief that we are loved and welcomed into the world unconditionally. He questions eugenicist practices to the extent that they demean existing disabled people by saying that, in essence, they shouldn't have been born. But the fundamental sense of security goes beyond that, in that he suggests that this kind of screening makes us all feel like our being welcomed into the world is conditional, and wouldn't have happened if we were too far out of some window of acceptability. In a society that regularly practices this kind of screening, he writes, "people talk about unconditional love; yet they know that they themselves were allowed to be born because they satisfied certain »explicit« conditions imposed by their parents." I don't know to what extent this is right (and I don't know how firm on it Morioka is for that matter), but I think it's worth thinking about. In particular, the effect on those already-living people with congenital conditions seems much likelier to me. I also think, and this is another thing Morioka touches on in some of his writings, that we have to be careful in boxing ourselves in in terms of defining what "happiness" can and does look like.
It's strange to me reading this article in the context of abortion without cause. In the US, abortion is offered and legally protected, and there is no need for cause. It's best if you don't state the reasons if you tell anyone at all, because without reasons, you cannot easily be judged. "I cannot support a child" or "I am not ready for a child" are sufficient in some circles. There are more widely acceptable reasons. My life would be significantly different were it not for an abortion. There would be another life, perhaps healthy, perhaps not, perhaps happy, perhaps not; most likely it would be some combination of them. For those that support abortion, it seems acceptable to prevent inconvenient life, as long as the inconvenience doesn't originate from specifics about the life itself. If specifics about the life are involved, then suffering must be the cause, and the suffering must be significant. That seems philosophically Western to me. On the other hand, I have heard our Chinese acquaintances relate an abortion as if it were a tooth extraction. When it comes to disability, you needn't go back far to step out of the Overton Window. I'm sure it will leave our present time soon. We are all monsters in someone else's time.
Come on, gimme some more sob stories. Put on the whole special needs parade already. Tell me what a monster i am for daring to acknowledge the lives destroyed by lack of resources to support the parents and siblings of children with special needs. Fuck you and the bonus chromosome you rode in on.
No, Ben, I am not interested in having that conversation. I feel bad for you, this is not a healthy approach, I think you know it, I think the rest of the people on Hubski knows it. I'm here if you want to talk. Don't need to say more than that, others have already put it in more words.
Here's some hot takes. 1. Only wanted, intentional pregnancies should ever take place. 2. No unwanted children should be conceived or born. 3. No child should be forced to be born with disabilities. It is irresponsible behavior on the part of parents to not do everything in their power to save their children the heartache of lifelong disease and suffering orders of magnitude above human baseline. 4. It nauseates me to no end that this article is arguing that more people with disabilities should be born when we cannot step up on a global stage to protect the lives of the disabled that live right now. It nauseates me to no end that the goal of human society at present seems to be to generate as many living people to suffer as badly as possible. 5. If you want more than 2 kids your taxes should go up. Christians have used their breeding advantage and brainwashing to manipulate liberal democracy and will continue to do so. 6. It's bullshit that healthy people get to say living with a disability is tolerable. This isn't fucking Denmark and Americans continue to demonstrate that we will NEVER be able to think and act with enough collective willpower to improve the lot of our least fortunate. 7. The stereotypical image of the smiling happy easy to manage verbally communicative Downs patient and his wealthy, selfless nordic mother presented by the article is a gross misrepresentation of the average quality of life experienced by the average downs patient, particularly in the United States where social support for such ranges from limited to non existent. 8. Fuck this author and viewpoint in the neck. STOP. INTENTIONALLY. BREEDING. MORE. SICK. KIDS. BASTARDS.
I'll say this. A good friend of mine was a teacher for a decent stretch of time, and focused on teaching autistic children. She found it extremely rewarding but that's inconsequential and completely besides the point. She always had a lot to say about how happy and full the lives of her students were. I remember when my wife and I were looking at having a kid, and I was talking to her about my fears that at our age there was a higher probability of genetic issues resulting in things like Downs Syndrome. I will always remember the distinct lack of time that elapsed in her reply, coupled with her nakedly honest response asking why that would even matter, -that children with Down syndrome where just as awesome and capable of radical happiness as any other. I still think about that jarring moment to this day.
I'm curious as to why we need to augment your self-loathing on this one, Ben. The article is a nuanced, long-form investigation of "velvet eugenics" and the impact of prenatal testing on parents, children and society. By your own admission you've undergone professional and voluntary education and training on medical ethics, so this is likely something you've grappled with your entire adult life. You're an intelligent man, capable of distinction and compartmentalization but lately you've eschewed all that to get people to yell at you. It seems to be a form of "the religious shouldn't breed" and no amount of discussion around "this isn't a religious discussion" or "this isn't a people shouldn't breed discussion" dissuades you from your monolithic pursuit of castigation. It's a shame because clearly you could add to this discussion but you're instead choosing to obfuscate it with inflammatory language so the discussion can be all about you. What are you worried about us discussing? What are you trying to distract us from? As someone whose life has been shaped by congenital defects I would value your input if you chose to share it. Speaking for myself, we went out of our way to get our kid genetically tested. We absolutely would have aborted if we'd popped Trisomy 21 because yeah - that's an 80% mortality rate with profound lifestyle impacts. Some of the other stuff? We didn't plan. Fortunately it didn't matter. So I have a perspective on this, and appreciate the perspectives of others. And I'm curious what you're so afraid of. I'm guessing there's an outward "I wish I was never born" performative dance that supports you socially, combined with an inner "but I love my fiancee and am actively planning a future" hopefulness that can't be reconciled, so you go through this "pay no attention to the man behind the curtain!" Kabuki because if you have to admit that you actually hope you wake up every morning you'll be forced to address that you have something to lose now and you're just too spiritually weak to accept that the world would regret your passing. After all, if you value the world and the world values you, you might just have to press pause on your wholesale outward rejection of your entire inherited value system. You might have to examine your core beliefs and attempt to mature as a man. And it's so much easier being the angry product of arrested development. You're getting lazy with it though. It's transparent. It also demonstrates how uncomfortable you are with yourself and your self image, which is usually a sign of readiness for growth. I, for one, am here to help. Happy Holidays!
You know... I originally posted a picture of a friend of mine with Downs and jokingly said “my other friend Ben said you can eat a bag of dicks”. But I had to delete it. This Ben would never say that. Frankly, he’d never say anything mean like that. Ben reminds me of all that is good in the world. He is a man filled with love. He lights up a room. He is happy. So I deleted the picture of Ben because he would be sad if he knew that I weaponized him because I was frustrated with your disregard for his life. He would hug you and tell you he “loves you too much”. So you don’t get a picture of Ben with a snippy response from me. Instead you get this response. Which is me being sad for you. Sad that you’re so angry at the world that you would rob the humanity from people who are often times the best of us. I’m embarrassed that I sunk to your level.
I hope Ben had a good thanksgiving yesterday. If there’s ever a happy opportunity to share Ben with the site, please do!
I'm sorry, at any point in this did I say that I believe that we should mistreat people with Downs or any other disability? I firmly believe that we should treat people with all varieties of disability with nothing less than the upmost compassion and with as much dignity as we are capable. THAT. IS. DIFFERENT. FROM. SAYING. DISEASE. IS. THE. SAME. THING. AS. HEALTH. Grotesque.
Nah I've never once given thought to that idea in all my literal years of study of the issue while in college, while in my ongoing and repeated ethics training at work and in my private reading and study on medical ethics. Has never occured. You, and steve here are advocating for the spread of disease.
OB, there's a difference between 'not agreeing with your' and 'supporting the opposition in your head'. You have years of training in ethics, I know you're knowledgeable of genetics and medicine. Laudable! Please, use them, and try talking to people like they're not going to, I don't know, disagree with you just because disease are so gosh darn fun. Nevralgic topic aside, lumping everyone who isn't giving you 100% unquestioned support into one bag, the selfish unenlightened far/alt-right Trump-supporting bible-thumping COVID-denying scum as I presume, insults everyone. Can't you see it, or you just don't care? And before you say some variant of "to hell with manners, this is WAR!", you really, really should care. Not because honey gets more flies than vinegar, but because angry shouting only works on spineless, children or people already intimidated by you.
I am coming at this from an angle of not wanting to have any kid at all. To relate it to the article - "To have a child is to begin a relationship that you cannot sever. It is supposed to be unconditional" - I am not really fine with that kind of responsibility. And kids are a lot of work, work I don't think I'd enjoy at all. With choosing to have a child with Down Syndrome it seems like you are choosing that work for the rest of your life. This discussion has been happening in Sweden too, with some saying that screening for trisomy 21 is immoral and bad for society. I viewed that as kind of selfish in the past. People who had the means and will to take care of a child who meant so much more work wanting to force that on others for some kind of benefit to society as a whole. And I also viewed it as dishonest when they talked about their kid who was happy all the time and so so sweet without mentioning any of the undeniably negative effects on health Downs Syndrome can include. I viewed it as people wanting to deprive women of a choice in order to further their own agenda. Now I have a bit more of a nuanced view of it, and recognize that it isn't really that simple. Women (and families) are offered a choice but maybe not a fully informed one. Scanning for trisomy 21 doesn't necessarily give all the information that we often think it does. And I understand that parents of children with Downs Syndrome who don't want it to be a routine screening dislike it because they think it gives prospective parents an uninformed choice based on preconception and not facts. And I agree that society's view of success and a good life maybe isn't really the best life one could have. And that the values we hold maybe aren't always the best. Your human value shouldn't be in the work you can preform or the accomplishments you can have. Like, should the answer to people with disabilities facing difficulty be to make society more supportive or to have people with disabilities not be born? To me the former feels more humane. But at the same time you can't really just ignore the fact that some disabilities lead to a worse quality of life. A disability causing constant pain or leading to an early death isn't just "a different way of being human".
Come now, Ben. That's not what disgusts you at all. This is an ambivalent article about which most of us, when we've expressed an opinion at all, have expressed ambivalence. You've chosen to not just blaze through that ambivalence but to pretend the article says something it doesn't so you can be offended - your viewpoint is "Stop. Breeding. Sick. Kids. End of story" about an article that says in three different places that there were 19 children born with Downs Syndrome in Denmark in 2019. Based on birth rates, that's 0.03%. In the US it's 0.14% so really - you're pretending to be mad at people doing what you want them to do so well that they've reduced the prevalence of one form of birth defect by 80%. I'm going to guess you've lashed out and blamed your parents for having you. I'm also going to guess that they've used some form of the phrase "god's will" in order to imply that the struggles you deal with every day are somehow good rather than terrible. I'll even go one further and hypothesize that the original schism between you and your faith was your condition, and that if you'd been born normal and happy and unafflicted you'd be going to church every Sunday and the star of the choir. If you want to make this all about you I totally can: you are an atheist because God let you down. Your vehemence against the religious is due to their acceptance of your affliction and their lack of helpful support beyond encouraging you to do the same. The more health issues you're dealing with, the angrier you get; I mean you telegraph this stuff like an amateur boxer. What's really telling is your insistence that the rest of us address and humor your obsession. You're like a 911Truther in that somehow, no matter the discussion, it all ties back to Building 7 and the Jews. Funny thing about conspiracy theorists is they tend to insist on imposing a twisted sense of order on the external world in order to avoid unresolved internal turmoil. I think fundamentally you don't disbelieve in God, you're just angry at him and whenever any of your taboo subjects come up tangentially you start barking like a kicked dog. You clearly wanna lash out and since the guy you really want to lash out at is the Invisible Cloud Being, the rest of us will have to do. I mean, I went as Jesus for Halloween once (girlfriend went as the devil; she was hawt) so I can't even be offended. But I think it's helpful for the rest of us to keep in mind that we're just involuntary stand-ins for your shouting match with The Big Guy. Lemme know if he ever listens.