Seriously, fuck this shit. My aunt had a baby that she knew was at a great risk for downs (she did not have the test because she didn't want to make the decision). She got a precious little girl with Downs, who happens to be the love of my life. However, my aunt is a non-profit director who lives in Baltimore. She has the compassion, the capacity, and the financial stability to care for this child. She also has Johns Hopkins right next door. She has the support of the entire family. When my inner-city-Philadelphia grandfather found out, he responded "well, we're moving to Baltimore." The family has been supportive of the other children and of allowing the parents to take time off. While this is the first Down's child in my family, I can imagine what it's like for others. If the support network isn't there, this can be a horrible fate. Having a Downs or developmentally disabled child is a tough fate. God bless 'em. But it's not for everyone, and that is each woman's decision to make.
People with Down syndrome are MUCH more likely to develop Alzheimer's, and at a much earlier age: three-quarters of them will get it by the age of 65, compared with about a tenth of the general population.
It would be hard enough to bring a child into the world that had Down's Syndrome; add to that the virtual guarantee that the child would experience Alzheimer's on top of that....well, there's a reason that (according to the NYT) 90% of those fetuses that test positive for Down's Syndrome are terminated.
@magstheaxe: Most people who have Downs Syndrome don't live past 50, sadly. The reason that people choose to terminate children with Downs is because they can't handle a disabled child, for whatever reason.
I would personally not abort a healthy child but if I get pregnant I would have the fetus tested for everything before deciding to keep it.
I know I am in the minority, but I do not think it is okay to have children who will tax our already over-extended world resources. If humanity doesn't want to have a massive die-off, at some point people are going to have to think about society as a whole instead of just themselves.
@Elaken: But aren't you thinking about yourself to some extent in that thought system. You are saying, I and my ilk, the "normal" ones deserve to be the ones using the world resources, not them and their ilk, the "abnormal" ones, the ones that drain our society. The scurge of the earth. Those who are less than me and mine. We need to get rid of them to protect our resources. Ultimately you are saying my life and the lives of other people like me are more worthy than the lives of others. Now, there have been many people before you who have said the very same thing and this led to the sterilization of the "unworthy" and killing off of the other. Be careful how you think. Your life is not better than anyone else's and you can't say that you are more deserving of life than anyone else. Let's say that you carry the breast cancer gene and will die because of it and could pass this on to your offspring. This greatly taxes the world's resources. Should you die? Should you have children with the knowledge that you passed on faulty genes. Who in fact should die? Should people that develop disabilities later on in life? Should people born with things that affect their life, but ultimately don't keep them from living full lives of their own, like the blind or the deaf or little people. How about the elderly, should we no longer care for them? See how dangerous this thinking is and how focused it is on yourself and your definition of what is worthy and what is not?
There is a difference between having defective genes (which everyone has) and not having the potential to contribute to society as a whole. I am talking about things like various forms of spina bifida where the average cost over a lifetime, for medical expensive is something like half a million. Oftentimes the children have a variety of other diseases, in addition to a lower IQ. Other than the value they have to their family a child born with these problems who is going to die at 15 does not give anything to the world.
I have never bought into the idea that all life is sacred. I think our world and humanity as a whole is sacred. And honestly I am comfortable saying that some people's lives are worth more than others. Why do people think that is so wrong? Are you saying if there were two people in a room and one had to die or they both would you couldn't make a decision? If one was someone dedicated to helping others and the other a rapist? You would think both should die then since you can't say one life has more value than the other?
The thing I don't get is do people not realize that at some point these judgment calls are going to have to be made? Our world is overburdened - something has to give. Apparently the vast majority people would prefer to just let the Earth crash.
Economists do it all the time when performing cost-benefit analyses. It's necessary because, while plugging infinity into the equations (i.e. life is 'priceless') makes us feel much better about ourselves, the implication is that any infinitesimal improvement that could be made to safety, no matter what the cost, is "worth" it.
The problem is that's not feasible. We have scarce resources. We have to peg lives at a dollar amount just so we can make realistic decisions about the resources we do have.
Or, instead of looking at the finances, look at another scarce resource that DS people would consume disproportionately: organs for transplant. It's already been stated that DS frequently need surgeries to correct physical defects such as heart malformations. Are they worth five heart transplants? Fourteen kidney transplants? Especially given the low organ donation rate and the waiting lists? Are you willing to let healthier patients die so that a DS person who's likely to come down with Alzheimer's or other conditions in aa few years anyway get those scare organs.
Our current health care system in the US hides the opportunity costs of such decisions, thus allowing us to avoid the really tough ones by simply letting an invisible hand do the dirty work. But such a system is not really sustainable, and we're already starting to see it break down. However, any alternative will require deciding rather exactly how much various lives are worth.
@Elaken: So downs children will never be able to contribute to society as a whole and are tantamount to rapists? And I seriously want to know who makes these decisions and what rubric we are using. Would Stephen Hawking as a child not be worthy for life because it takes way too much money to care for him? Do we kill off the elderly because they take too much of our valuable resources to care for and can't contribute much to society? I'm also not buying the, we need to make judgment calls on what life is worthy of existing and what life is not so the world doesn't end bullshit. If you really want to help the world deal with over population, there is a very simple way to do that, educate women, have them fully enter the work force and give them the agency to make birth control choices for themselves. That has proven time and again to be the very best way to reduce the population. I don't believe that I have the ability or right to judge whose life is more worthy of existence. The people who have said they have the right to do that have done some of the very worst things to society. I don't think in ridiculous "what if" scenarios because I should never and will never have to make a decision like that. However, if we're going to propose ridiculous scenarios like this, I ask you this: Let's say that I had to kill one person in the room and I had to choose between you and my friend with Downs Syndrome who owns his own small recycling business picking up recyclables from local businesses and sorting them and taking them to a large recycling center, is happily married to another lady with Downs Syndrome, lives on his own, volunteers as a Santa Claus at Christmas time and with the local humane society? Who should I choose? You self-righteous person who says that society should kill undesirables or my friend who contributes regularly to his local community in a very real way?
@magstheaxe: Doctors make the decision of who should or should not receive heart transplants and they are better able to discern who should and should not receive them that you, I or any economist. Doctors that see that someone will not be healthy after a heart transplant do not move people up that heart transplant if they don't believe it will help them. Also, I addressed people with Downs and advanced age below. People with Downs usually don't live to an advanced age, so, it's a non-issue. I wouldn't be too stressed out by the whole over population craze going around. We will soon have a huge population, the baby boomers die off in the U.S. Especially considering that they (and we) have eaten so much crap over our lives that we will probably all die from stroke or some other weight related illness. Once the boomers are gone, the U.S. population will drop like Europe has. Though, we will probably always have a booming population because of our immigration policies. If you are seriously concerned about over population, work to educate women and have them enter the work force so they have the agency to make decisions about their bodies and families.
(1) If you think doctors (and other in the medicine) aren't taking costs into consideration when they make those kinds of decisions, you've got another think coming. The (non-DS) brother-in-law of one of my girlfriends is dead because the doctors realized that his financial situation meant he couldn't afford the anti-rejection drugs that would allow him to have an organ transplant. Author Terry Pratchett is being denied Arciept by Britain's NHS of the cost versus the benefit. It happens everyday; it's just not talked about because people would rather pretend that life is priceless and we'll never run out of the things we need.
(2) Life span for people with DS is most certainly not a non-issue, or have you forgotten that, thanks to some basic medical advances in the past century, DS people are living longer than ever before? That's how some of the later-age mental and physcal problems resulting from DS have come to be discovered--they used to die before the problems ever manifested.
@magstheaxe: I did say that doctors are better able to make these decisions that I would be able to. Doctors also decide that people who smoke should not have transplants or people who are alcoholics or people who have extenuating circumstances that mean that they won't have a long life after the transplant, like people with AIDS or other forms of cancer. As to your second point. The majority of people with Down's won't live to that age. Also, should I as someone with a history of breast cancer in my family to the point that my maternal grandmother and all five of her sisters had it and died in their early fifties and I have an aunt who had a double mastectomy at age 28 and is a confirmed carrier of the "breast cancer gene." I also have a grandmother with Alzheimer's, a grandfather who died of a heart attack because of high blood pressure and I have asthma. Should I not have life because I have the same crap shoot of chances that people with DS has in older age? Or do we deal with the toss of the dice that we are given? I prefer to say, I want to deal with the dice that's thrown that have some sort of GATTACA future.
@magstheaxe: People don't get 14 transplants, so that whole analogy is pretty ridiculous.
The whole idea that people with Downs syndrome don't contribute is a little out of touch. There has been a huge push to employs Downs adults in entry level jobs in post office, grocery stores, etc. Very simple jobs that are also necessary.
And resources? I understand the comparison with spina bifida, but its not as though people with Downs syndrome use up more electricity or something. They MAY need extra medical attention, but so may any other fetus.
This whole "We should abort babies with Downs!" argument makes no sense. It isn't the 5,000 Downs babies born in the US that are increasing the strain on our natural resources, its large scale population expansion and increased quality of living in the developing world and the continued refusal of the US to meet basic environmental standards.
We are no where near the point of killing people for resources, but if we are every at that point, I'd like the eugenicists to sacrifice themselves for the greater good.
@Jenloveshercurves: "I did say that doctors are better able to make these decisions that I would be able to. Doctors also decide that people who smoke should not have transplants or people who are alcoholics or people who have extenuating circumstances that mean that they won't have a long life after the transplant, like people with AIDS or other forms of cancer."
Yeah, like David Crosby. Or Larry Hagman.
And welcome to the Breast Cancer Gene Club, by the way. I'm a member, too. Just buried my mother two years ago.
My point is, you don't have the same crap shoot as the DS person. With your health problems, your odds are way, way better. You're already living in a near-Gattaca future because decisions like what I've been talking are already being made around you, without your direct involvement, and you've already benefited from them.
I will also point out that there are plenty of DS children awaiting adoption, and I notice that while a lot of people in this discussion are convinced that DS is all rainbows and unicorns, no one seems to be interested in taking one in.
@magstheaxe: What is with all the bitterness and hatred?
There are a lot of older children and children of color also waiting for adoption, but the fact that no one adopted them doesn't mean they are less than white infants. Adoption is a lot more complicated than you make it seem.
No not every person with Down Syndrome is employable, but lots and lots of people with Downs syndrome are. My local grocery store has a few workers with Down syndrome, my co-worker's brother works in the post office. Frequently unemployment has more to do with bias and opportunities than ability.
@magstheaxe: Actually, there is a whole list of people waiting to adopt a child with Downs Syndrome and as someone who has worked with children and adults with Downs Syndrome before, it's something that I might just do when I'm able. So, let's stop with the self-righteous talk when you are thinking about making blanket decisions for a whole lot of people. I suspect in your world these decisions would be made for the parents in question rather than them making that decision for themselves.
@magstheaxe: I also want to clarify, your position is that fetuses with Downs Syndrome should be categorically aborted because they have more health problems and have a lower IQ and are a drain on our society, correct?
As someone who has a sister with Down's, I can say that my immediate reaction to someone who says they'd abort a baby with Down's is a punch in their face. But I know that I have to stop and think about it, because I know I wouldn't want to carry to term a child with sever physical disabilities, like 'conjoined twins' or things like that. So I know I can't judge, and choice is all that matters. But no one will read this anyways so who cares.
My boyfriend works in a live-in group care home for adolescents with some major developmental and cognitive disabilities. By and large, they are great kids and they are doing well in their lives...but because they live in a structured environmental with constant care, something not every child can receive. From what he tells me of his work experiences, I have come to realize that there is absolutely no hard and fast rule about whether or not to terminate a pregnancy if a child tests positive for a genetic disorder. I understand now quite clearly how much commitment and compassion it takes to raise a child with disabilities, not to mention financial resources. There are so many factors to consider. I also think it is important to realize that people don't really take these choices lightly. Mothers aren't willy-nilly deciding to terminate a pregnancy that they wanted and lose a child, which is a devastatingly difficult decision to make. I used to think I would probably not abort if confronted with this situation, but now all I know is that I do not know what I would do until it was me who had to choose. So who am I to tell anyone else what is right for them?
Isn't using Down Syndrome to argue against the pro-choice movement kinda disingenuous? As in the overwhelming percentage of abortions are performed on women who do not want to give birth, who do not want to have a child, whereas if parents who are offered the option to abort their child if it screens positive for Down Syndrome have obviously already thought as far ahead as carrying a child to full term?
I don't know if I'm making much sense; I think I'm trying to say that I obviously have many reservations about the eugenics aspect of abortion (in regards to gender, physical capabilities, etc.), but I don't think that it can be argued in the same breath as an argument seeking to deprive women of their overall reproductive rights (many apologies if I've confused you more).
A very close friend, we'll call her M, had an abortion 3 years ago of a baby that was diagnosed with Downs. It was very sad for her, but she and her husband were 38 at the time and one factor that influenced them strongly was knowing that, if their child lived to a healthy adulthood, they would elderly and not in a position to ensure that s/he would not be institutionalized for a large portion of his/her life.
They were living in Northern Ireland, and had to go to London for the abortion. Their OB/Gyn and his nurse treated them like filthy animals (abortion is strictly illegal in Northern Ireland) and forced my friend to watch during her ultrasound so that she could "see what she was doing." The nurse spat at her: "This is what happens when you people wait so long to have children."
The truth about her pregnancy had to be concealed from neighbors and colleagues and my friend M told everyone that she "lost the baby." She was alone in her grief, except for friends and family overseas.
Anyway, it was a horrible time for them, but they had a healthy little girl last year, and are expecting another one next spring.
No one knows for sure what they do in that situation until confronted with it, I think, and it's hard to imagine women who would stigmatize another woman's choices in that situation, but they exist.
I commend any woman with the strength to knowingly give birth to a special needs child because I know from experience how difficult that can make life.
That said, I don't get why Palin is lauded for having Trig. If it's not a choice, then she didn't do something admirable, she just...did. I mean, I don't get congratulated for not murdering my condescending boss because that's not an option. She doesn't deserve to be any more praised for having him (something that wasn't a choice she made) than does a woman who had a healthy baby for putting her body through the pain of childbirth.
When I was pregnant with my daughter (and final child) the blood tests came back positive for Down Syndrome. As soon as I hung up the phone with my doctor I knew right then and there that this was my baby, thick or thin. We proceeded with further testing (so we would know what we were up against) and she did not end up having DS.
Previous to this experience I would have said that I'd consider aborting but the moment was so perfectly clear and there was absolutely no way I'd abort that baby.
I guess what I am saying is: you never know until you're in that moment.
My godmother is 54 and has Down's but none of the severe health problems that go along with it. She has a great personality, loves movies, is funny and seems to be pretty happy. I'm not sure what I would do when faced with the choice, but I think I wouldn't abort. I know without a doubt that everyone in our families would be incredibly angry and try to talk us out of it if they knew.
I think there is definitely a stigma attached to aborting because of Down's. Just as an example, a colleague of mine gossiped to me, when I was about 4 motnhs pregnant (and she knew) about an ex-colleague of hers who was having an abortion because the baby had Down's. I told her, one, I don't really want to hear that right now, and two, it was a personal decision for that woman and it was probably pretty damn hard for her. I told the story to some other people (obviously not mentioning any identifying facts about the pregnant women, just trying to show what a gossipy bitch my co-worker was). I was suprised that a couple of people thought the woman was awful for having an abortion.
quoting from the article in Guardian: almost one in five [of parents who had DS babies] said they simply did not believe the test results.
this gives me pause. "did not believe" as in "noNONONO, MY baby cannot possibly have DS!"? that cannot be a good situation for the DS babies to land in :/
Given how many other associated medical issues often go hand in hand with downs syndrome I can't be surprised that births are more common in a country with universal healthcare. They don't have to worry about what happens if the kid needs open heart surgery to live or whatever.
@kellyhelene: Yep, my uncle needed a LOT of health interventions, including several heart surgeries. If he weren't born to a doctor who has the resources available that they did, his already short life would have been much shorter and probably more painful.
I have known two girls with Down's - one severe and one very mild.
The former girl may need assistance her entire life but it is a good life. She is happy, ready to learn and feels no pain (which is really a big factor when you boil it down). Well, she doesn't like strings on her bananas but that's about it.
The latter girl graduated with my class, she went on to community college and got married. She will always look like she has Down's but that's about it.
Personally, I would never terminate the life of my fetus if they were tested positive for Down's. Now, if my child was going to be born with a crippling nervous disease, a hole in their heart or something along those lines. I would rather they never feel such pain again. It would break my heart.
11/25/08
11/25/08
People with Down syndrome are MUCH more likely to develop Alzheimer's, and at a much earlier age: three-quarters of them will get it by the age of 65, compared with about a tenth of the general population.
[www.pubmedcentral.nih.gov]
[www.ncbi.nlm.nih.gov]
[www.webmd.com]
It would be hard enough to bring a child into the world that had Down's Syndrome; add to that the virtual guarantee that the child would experience Alzheimer's on top of that....well, there's a reason that (according to the NYT) 90% of those fetuses that test positive for Down's Syndrome are terminated.
[www.nytimes.com]
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I know I am in the minority, but I do not think it is okay to have children who will tax our already over-extended world resources. If humanity doesn't want to have a massive die-off, at some point people are going to have to think about society as a whole instead of just themselves.
11/25/08
11/25/08
There is a difference between having defective genes (which everyone has) and not having the potential to contribute to society as a whole. I am talking about things like various forms of spina bifida where the average cost over a lifetime, for medical expensive is something like half a million. Oftentimes the children have a variety of other diseases, in addition to a lower IQ. Other than the value they have to their family a child born with these problems who is going to die at 15 does not give anything to the world.
I have never bought into the idea that all life is sacred. I think our world and humanity as a whole is sacred. And honestly I am comfortable saying that some people's lives are worth more than others. Why do people think that is so wrong? Are you saying if there were two people in a room and one had to die or they both would you couldn't make a decision? If one was someone dedicated to helping others and the other a rapist? You would think both should die then since you can't say one life has more value than the other?
The thing I don't get is do people not realize that at some point these judgment calls are going to have to be made? Our world is overburdened - something has to give. Apparently the vast majority people would prefer to just let the Earth crash.
11/25/08
Economists do it all the time when performing cost-benefit analyses. It's necessary because, while plugging infinity into the equations (i.e. life is 'priceless') makes us feel much better about ourselves, the implication is that any infinitesimal improvement that could be made to safety, no matter what the cost, is "worth" it.
The problem is that's not feasible. We have scarce resources. We have to peg lives at a dollar amount just so we can make realistic decisions about the resources we do have.
Or, instead of looking at the finances, look at another scarce resource that DS people would consume disproportionately: organs for transplant. It's already been stated that DS frequently need surgeries to correct physical defects such as heart malformations. Are they worth five heart transplants? Fourteen kidney transplants? Especially given the low organ donation rate and the waiting lists? Are you willing to let healthier patients die so that a DS person who's likely to come down with Alzheimer's or other conditions in aa few years anyway get those scare organs.
Our current health care system in the US hides the opportunity costs of such decisions, thus allowing us to avoid the really tough ones by simply letting an invisible hand do the dirty work. But such a system is not really sustainable, and we're already starting to see it break down. However, any alternative will require deciding rather exactly how much various lives are worth.
11/25/08
11/25/08
11/25/08
(1) If you think doctors (and other in the medicine) aren't taking costs into consideration when they make those kinds of decisions, you've got another think coming. The (non-DS) brother-in-law of one of my girlfriends is dead because the doctors realized that his financial situation meant he couldn't afford the anti-rejection drugs that would allow him to have an organ transplant. Author Terry Pratchett is being denied Arciept by Britain's NHS of the cost versus the benefit. It happens everyday; it's just not talked about because people would rather pretend that life is priceless and we'll never run out of the things we need.
(2) Life span for people with DS is most certainly not a non-issue, or have you forgotten that, thanks to some basic medical advances in the past century, DS people are living longer than ever before? That's how some of the later-age mental and physcal problems resulting from DS have come to be discovered--they used to die before the problems ever manifested.
11/26/08
11/26/08
The whole idea that people with Downs syndrome don't contribute is a little out of touch. There has been a huge push to employs Downs adults in entry level jobs in post office, grocery stores, etc. Very simple jobs that are also necessary.
And resources? I understand the comparison with spina bifida, but its not as though people with Downs syndrome use up more electricity or something. They MAY need extra medical attention, but so may any other fetus.
This whole "We should abort babies with Downs!" argument makes no sense. It isn't the 5,000 Downs babies born in the US that are increasing the strain on our natural resources, its large scale population expansion and increased quality of living in the developing world and the continued refusal of the US to meet basic environmental standards.
We are no where near the point of killing people for resources, but if we are every at that point, I'd like the eugenicists to sacrifice themselves for the greater good.
11/26/08
Yeah, like David Crosby. Or Larry Hagman.
And welcome to the Breast Cancer Gene Club, by the way. I'm a member, too. Just buried my mother two years ago.
My point is, you don't have the same crap shoot as the DS person. With your health problems, your odds are way, way better. You're already living in a near-Gattaca future because decisions like what I've been talking are already being made around you, without your direct involvement, and you've already benefited from them.
11/26/08
I will also point out that there are plenty of DS children awaiting adoption, and I notice that while a lot of people in this discussion are convinced that DS is all rainbows and unicorns, no one seems to be interested in taking one in.
11/26/08
There are a lot of older children and children of color also waiting for adoption, but the fact that no one adopted them doesn't mean they are less than white infants. Adoption is a lot more complicated than you make it seem.
No not every person with Down Syndrome is employable, but lots and lots of people with Downs syndrome are. My local grocery store has a few workers with Down syndrome, my co-worker's brother works in the post office. Frequently unemployment has more to do with bias and opportunities than ability.
11/26/08
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I don't know if I'm making much sense; I think I'm trying to say that I obviously have many reservations about the eugenics aspect of abortion (in regards to gender, physical capabilities, etc.), but I don't think that it can be argued in the same breath as an argument seeking to deprive women of their overall reproductive rights (many apologies if I've confused you more).
11/25/08
They were living in Northern Ireland, and had to go to London for the abortion. Their OB/Gyn and his nurse treated them like filthy animals (abortion is strictly illegal in Northern Ireland) and forced my friend to watch during her ultrasound so that she could "see what she was doing." The nurse spat at her: "This is what happens when you people wait so long to have children."
The truth about her pregnancy had to be concealed from neighbors and colleagues and my friend M told everyone that she "lost the baby." She was alone in her grief, except for friends and family overseas.
Anyway, it was a horrible time for them, but they had a healthy little girl last year, and are expecting another one next spring.
No one knows for sure what they do in that situation until confronted with it, I think, and it's hard to imagine women who would stigmatize another woman's choices in that situation, but they exist.
11/25/08
11/25/08
That said, I don't get why Palin is lauded for having Trig. If it's not a choice, then she didn't do something admirable, she just...did. I mean, I don't get congratulated for not murdering my condescending boss because that's not an option. She doesn't deserve to be any more praised for having him (something that wasn't a choice she made) than does a woman who had a healthy baby for putting her body through the pain of childbirth.
Sorry, this really irks me.
11/25/08
11/25/08
Previous to this experience I would have said that I'd consider aborting but the moment was so perfectly clear and there was absolutely no way I'd abort that baby.
I guess what I am saying is: you never know until you're in that moment.
11/25/08
11/25/08
I think there is definitely a stigma attached to aborting because of Down's. Just as an example, a colleague of mine gossiped to me, when I was about 4 motnhs pregnant (and she knew) about an ex-colleague of hers who was having an abortion because the baby had Down's. I told her, one, I don't really want to hear that right now, and two, it was a personal decision for that woman and it was probably pretty damn hard for her. I told the story to some other people (obviously not mentioning any identifying facts about the pregnant women, just trying to show what a gossipy bitch my co-worker was). I was suprised that a couple of people thought the woman was awful for having an abortion.
11/25/08
this gives me pause. "did not believe" as in "noNONONO, MY baby cannot possibly have DS!"? that cannot be a good situation for the DS babies to land in :/
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The former girl may need assistance her entire life but it is a good life. She is happy, ready to learn and feels no pain (which is really a big factor when you boil it down). Well, she doesn't like strings on her bananas but that's about it.
The latter girl graduated with my class, she went on to community college and got married. She will always look like she has Down's but that's about it.
Personally, I would never terminate the life of my fetus if they were tested positive for Down's. Now, if my child was going to be born with a crippling nervous disease, a hole in their heart or something along those lines. I would rather they never feel such pain again. It would break my heart.
11/26/08